tag:blogger.com,1999:blog-91073485003213529112024-02-18T03:48:17.916-05:00Travels with Tessie Toodles "...and though she be but little, she is fierce."
-Shakespeare smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.comBlogger183125tag:blogger.com,1999:blog-9107348500321352911.post-325024122934865982023-05-10T12:25:00.000-04:002023-05-10T12:25:09.380-04:00Let's Hear It For The Nurses...<p> Apparently the only thing that can get me writing in my blog again is to celebrate Nurses Week! Or more specifically, two nurses in particular...</p><p>Sheila and Lindsay.</p><p>Of course our beloved She-She (Sheila) has appeared many times off and on throughout this little blog. How could she not? She literally walked into our lives in the summer of 2008 just to provide a one time visit to check on Tess and the rest is history. We absolutely refused to let her go. One time visit? I do not think so, ma'm. We are like the Bermuda Triangle. We suck you in and you never can get back out. </p><p>Sheila is family now and that's the end of it. She has held my hand, given me hugs, cried with me, argued with me, and basically made my life so, so much better by being in it. She's like my big sister. And that doesn't even begin to talk about how much she's given to, and done for, Tessie. It is not an exaggeration for me to say that a good part of the reason that Tess is still with us today is because she's had Sheila in her life caring and advocating for her. That is why Tess gave Sheila her graduation stole as a way to thank her.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzhAffu13Tt8ma4pp1YZloo1Gu5ti2RpwPppolE_o7jjUxqGBeQYxTo3ypT3RVYg5RhfBAqtYOLrK4ACPqU4g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><p><br /></p><p>Ever since I've known Sheila she has worked in a hospital along with taking time to come care for Tess in our home (off and on throughout the years). She was the absolute BEST emergency department nurse in Rockport for many, many years before moving to Southern Maine where, I have no doubt, she is the best nurse in her department at their hospital. </p><p>Sheila can be literally out of the country, and if I need her, I can reach out to her. She's never not going to call me back if she sees I've tried to reach out to her. She is my go to for any medical question about Tessie. I trust her, rely on her, and just have peace knowing, even if she isn't right next to Tess, she's just a phone call away. And if the shit should really hit the fan, she would be doing whatever was necessary to get herself to Tess. And Sheila is who I want whenever anything scary is happening with Tess. </p><p>There is not one single family milestone event that I can think of that Sheila hasn't made it a priority to either be at, or keep Tess with her for when Tess couldn't come with us. From Blake, Ellie's and of course, Tessie's high school graduations, to Blake and Ellie's college graduations, to keeping Tess (with help from Lindsay) while we traveled to Punta Cana for Blake and Bobby's wedding, to Ellie's med school Match Day celebration and then Med School graduation, Sheila is there to help and to celebrate with us. She is even making plans to be available in December and travel to New Hampshire so she can help (and also celebrate with us) with Tess when Ellie gets married. That's just who Sheila is. She knows that by her being there, I will be able to be fully present for my other daughters and get to just enjoy those moments knowing she is there if Tess runs into any trouble health-wise. It's such a gift. </p><p>There are too many, and at the same time, not enough words to describe Sheila and what a blessing she is and has been to our family. To any and ALL of her patients. Sheila loves with her whole heart and treats her patients like she would want anyone she loves to be treated. She is loud, fun, sensitive, kind, compassionate, smart, and above all, she cares about people. Sheila is a nurse. And I am so thankful for her. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFcd_cLx4QkY5DVX13bYjPoq2t6EuYa61wgnM9xO2X8k_jjIwMaDbiXeCBBoK0GuuJzYI0CgAr7tOAU179lmU_oV9h6nMKjVOCaT0wNJBoTTgjgrPADPRLynKFYPAo4eZ07ufb94qIkb2b0kMd0r8h1umbKeH7liOJSXCVXoSjYBkPLeNINEWRJRff6Q/s960/35798089_10210710465271650_1449307967819087872_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFcd_cLx4QkY5DVX13bYjPoq2t6EuYa61wgnM9xO2X8k_jjIwMaDbiXeCBBoK0GuuJzYI0CgAr7tOAU179lmU_oV9h6nMKjVOCaT0wNJBoTTgjgrPADPRLynKFYPAo4eZ07ufb94qIkb2b0kMd0r8h1umbKeH7liOJSXCVXoSjYBkPLeNINEWRJRff6Q/s320/35798089_10210710465271650_1449307967819087872_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVt5mEwvgXfQol-i4I6rm1A1PJgB5kn-Tnek1ad7RSH3drvg4cdI7fwGODNWNCSGeQA9diIlJXwQ4Xutz-AaHMXf0J5M4uzoQframJVo5BKfth973EP0e5TUxu-SkGHyfY6NxFUb_-l34qkv5WUzbTQOAHL4W9vpM_dSxkfIJX18aRDNLn8qVxCQEDpA/s2000/59751342_10212715822164319_7022633148026454016_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVt5mEwvgXfQol-i4I6rm1A1PJgB5kn-Tnek1ad7RSH3drvg4cdI7fwGODNWNCSGeQA9diIlJXwQ4Xutz-AaHMXf0J5M4uzoQframJVo5BKfth973EP0e5TUxu-SkGHyfY6NxFUb_-l34qkv5WUzbTQOAHL4W9vpM_dSxkfIJX18aRDNLn8qVxCQEDpA/s320/59751342_10212715822164319_7022633148026454016_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigGgqgzbniEyf9LqSu01H60ftqOOAwbcpfjygLEch4_B476BKRvsMzfAZxERiPwFvhCbT_j3XSdDTqTXaNZj6h7Lt4p407xugE2syJC3B7ai1z4VFRqyMQN5HD6GpPhILiv5TJE7x1DP60b0VFZAURlBf0A85_CVxmzdDtaF_IPb1I07xY-GTomFW5kw/s2048/304174604_10220245968533272_7258107577591672077_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigGgqgzbniEyf9LqSu01H60ftqOOAwbcpfjygLEch4_B476BKRvsMzfAZxERiPwFvhCbT_j3XSdDTqTXaNZj6h7Lt4p407xugE2syJC3B7ai1z4VFRqyMQN5HD6GpPhILiv5TJE7x1DP60b0VFZAURlBf0A85_CVxmzdDtaF_IPb1I07xY-GTomFW5kw/s320/304174604_10220245968533272_7258107577591672077_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrYry9fxvBDDC5aYCFcTAf7SlqrzSzEoqmvdIvDwUwOLRslsWxvk02I4nshfgQEfH4KJvu1xtv7qnoLos2Pf8fFkvzCi-__w0qJrDus02eW84PT9VImsi9NUEgW_MzewZflQUwNqaUvKoCxOjL5WTiVaARN6CXhR4xceL7TaWBgVRC7TfUwItfNH3N0A/s1100/304768407_10220245967973258_636735181314212668_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1100" data-original-width="828" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrYry9fxvBDDC5aYCFcTAf7SlqrzSzEoqmvdIvDwUwOLRslsWxvk02I4nshfgQEfH4KJvu1xtv7qnoLos2Pf8fFkvzCi-__w0qJrDus02eW84PT9VImsi9NUEgW_MzewZflQUwNqaUvKoCxOjL5WTiVaARN6CXhR4xceL7TaWBgVRC7TfUwItfNH3N0A/s320/304768407_10220245967973258_636735181314212668_n.jpg" width="241" /></a></div><br /><p><br /></p><p>Now let's chat a bit about Lindsay, aka Jan. Lindsay came into our lives when we moved to Scarborough so that Tess could attend the Morrison Center. Lindsay was the school nurse there. Then she met us. And Tess. And what can I say, that Reidy Bermuda Triangle thing is real and it's strong. She knew we needed a home health nurse and we knew we needed her. Again, the rest is history. She quit as the school nurse and we sucked her in as Tess's full time home health nurse with Sheila picking up the other hours that were available every week. </p><p>I could not believe my luck! These two women were a freakin' force of nature and to know that Tess was being loved and taken care of by them was such a stress reliever. </p><p>Lindsay and I hit it off pretty much right out of the gate. We were basically each others yin and yang. Lindsay is a softie and has a huge heart. She absolutely loved Tessie and treated her more as an equal than as her patient. I don't mean in the care she gave. Lindsay is an amazing nurse. I mean that she never doubted that Tess is smart with her own thoughts and opinions and treated her in that way. She would get such a kick out of Tess's eye rolls and sassy attitude. </p><p>Lindsay would go along with my crazy ideas for theme weeks or Halloween and even help make those ideas come to life. The woman literally made Tess's wheelchair into the Iron Throne for crying out loud and came dressed as Tessie's secret service when Tess was the president one Halloween. They would watch Tess's movies together, sing Tess's favorite songs together, and just generally love each other. It's safe to say that Lindsay was Tess's bff. </p><p>I relied on Lindsay for her opinion all the time where Tess was concerned. Does she look pale? Do you think she's getting sick? Is that a seizure? Is she still seizing? Do we need to call the doctor? She was sometimes met in the morning not with a "hi!" but with a "I'm in Tess's room! She's sick!" Which was code for...hustle your buns up here so I can be less afraid. </p><p>I managed to talk Lindsay into playing games with me when she had free time. This is when I started calling her "Jan". As in, "Sure, Jan", which is what Marcia Brady always said to Jan Brady in a very condescending tone. That would be my tone when I said it to Lindsay when she pretended to not care if she was losing. </p><p>We will not be discussing my attitude <i><b>IF </b></i>I <i>might </i>have lost a game.</p><p>Having Lindsay come nearly every day when I lived in Scarborough made, what could have been a very lonely time for me, fun. When Lindsay got married you better believe Tess, Charlie and I were there with bells on to celebrate with her friends and family. And you can also trust and believe that Lindsay made sure the dj played one of Tessie's favorite songs and pulled her onto the floor for a dance. </p><p>If Sheila is like an older (though barely) sister, then Lindsay is like a younger one. And like Sheila, there are not enough, and at the same time too many, words to describe all the amazing things about Lindsay. She's fun, she's kind, she's smart, she's tough, she pretends she doesn't care about losing games but she really does, she's an artist, and she has a huge heart for people. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOodppnK8s7L2Lu4I36UnG9P7Sqn8SlGvSKVaVOoLKf0idbbBh4xaQIQYY3Xis8xsuArhDVIIsfyws6qoT--hzISH1On--fc-Gy5Xv22jjKz0xCW5i6onFCYH-AFnLaZLPmZEZoHDHJ0x76Xz7VSYG_9-pxyR_nl3N2t9P1w__D145mprU0QiFfXYlug/s960/59974148_10212715821204295_988512978309480448_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOodppnK8s7L2Lu4I36UnG9P7Sqn8SlGvSKVaVOoLKf0idbbBh4xaQIQYY3Xis8xsuArhDVIIsfyws6qoT--hzISH1On--fc-Gy5Xv22jjKz0xCW5i6onFCYH-AFnLaZLPmZEZoHDHJ0x76Xz7VSYG_9-pxyR_nl3N2t9P1w__D145mprU0QiFfXYlug/s320/59974148_10212715821204295_988512978309480448_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd6C5UoTWgNOLto85SBb0PSFECxBTVpqJdzMmEXBgcOOAqVQT1BWhK2X7tBGkiMOvqV2ZRElTtmXnzy6p-T0nxaEHT1vDO_tPuZ-aSuM2vQlGC58hvK3nR9C83XuXS1uAoG8GnP2dT05OE8Wg4ojjz-QHpd6f77AENcZq4wvLRcloZFMlPDY1pwRWEZA/s2048/265627550_721760172137772_2769602481615366344_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1365" data-original-width="2048" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd6C5UoTWgNOLto85SBb0PSFECxBTVpqJdzMmEXBgcOOAqVQT1BWhK2X7tBGkiMOvqV2ZRElTtmXnzy6p-T0nxaEHT1vDO_tPuZ-aSuM2vQlGC58hvK3nR9C83XuXS1uAoG8GnP2dT05OE8Wg4ojjz-QHpd6f77AENcZq4wvLRcloZFMlPDY1pwRWEZA/s320/265627550_721760172137772_2769602481615366344_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbnckXEB4fqIYZec55blm2EUX5qSEmj1TKc9k1ZiToKZouhobWTCw69TF85xI1sb3xRR2GOv2_HtZYUH-uWHhP1gDkU5eaygqbebd1-FnTosjuqj66mqmkpZBxrv2q1Mq9UT6Lqe9XWmqQt5gBFADBTSFTDdYLH4TX_G11z7Wo6yQ6rsHe_DjJr4t4wA/s1335/300176376_10220221843690166_2545533972161900294_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1335" data-original-width="1071" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbnckXEB4fqIYZec55blm2EUX5qSEmj1TKc9k1ZiToKZouhobWTCw69TF85xI1sb3xRR2GOv2_HtZYUH-uWHhP1gDkU5eaygqbebd1-FnTosjuqj66mqmkpZBxrv2q1Mq9UT6Lqe9XWmqQt5gBFADBTSFTDdYLH4TX_G11z7Wo6yQ6rsHe_DjJr4t4wA/s320/300176376_10220221843690166_2545533972161900294_n.jpg" width="257" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFyC0_ZXOLUIzzNl-9PIvnOu5ZoHRaiUiMIEHajE8R1IYocAgePYbUEorpToRrXGPSRSjr9y1C597d4UprgC5_wYIBLeNAPw92TbL2z7aPS9RNXNvxXGkRsIFh6Su7EPwdLPVEbNtBWFFYoglWxd9wFgQTiMLaseeczmE_IXOQNXuDLpTS0Yhm-vKTXQ/s1725/300384935_10220221843610164_4629623219665872159_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1725" data-original-width="1380" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFyC0_ZXOLUIzzNl-9PIvnOu5ZoHRaiUiMIEHajE8R1IYocAgePYbUEorpToRrXGPSRSjr9y1C597d4UprgC5_wYIBLeNAPw92TbL2z7aPS9RNXNvxXGkRsIFh6Su7EPwdLPVEbNtBWFFYoglWxd9wFgQTiMLaseeczmE_IXOQNXuDLpTS0Yhm-vKTXQ/s320/300384935_10220221843610164_4629623219665872159_n.jpg" width="256" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz2sZo46zA7Piduu_A2SZthfybR3MonXQT7IsezbkL2PtestSxyO7TQ2VlVj8a4YuEGOD0HY3XOw0aHPOuR0b7L8VhJFYNUT-03PnFbBoRF-cZjQoWrHc_2-QaJLWlZHOKr_LHBfVwQZi0nkvSNAUt1kQmvY5qsxZsr2zY_OYG-GQviWMioU0-V2jmcQ/s1715/300398128_10220221843570163_1023664334939856381_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1715" data-original-width="1372" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz2sZo46zA7Piduu_A2SZthfybR3MonXQT7IsezbkL2PtestSxyO7TQ2VlVj8a4YuEGOD0HY3XOw0aHPOuR0b7L8VhJFYNUT-03PnFbBoRF-cZjQoWrHc_2-QaJLWlZHOKr_LHBfVwQZi0nkvSNAUt1kQmvY5qsxZsr2zY_OYG-GQviWMioU0-V2jmcQ/s320/300398128_10220221843570163_1023664334939856381_n.jpg" width="256" /></a></div><br /> <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqi_5Qb4ftJGXqFgYw6wsf5_V0R2cShtZOQmXut6uEJQZl2Fu_smMtbM3jgqsTXns9R9ztYebuEw-jMq-FA9AQeQwE6oGYmg0vXzW3_XORCds1Lhi4sU3FMNkn7SEwoycDI6GGBvdeo-c4_Acb7hcCUr1eZ_XPlsk2AsypxHLSqPpcNO9RksTbS_-ZRA/s1731/300008222_10220221843650165_7253346367018698068_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1731" data-original-width="1385" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqi_5Qb4ftJGXqFgYw6wsf5_V0R2cShtZOQmXut6uEJQZl2Fu_smMtbM3jgqsTXns9R9ztYebuEw-jMq-FA9AQeQwE6oGYmg0vXzW3_XORCds1Lhi4sU3FMNkn7SEwoycDI6GGBvdeo-c4_Acb7hcCUr1eZ_XPlsk2AsypxHLSqPpcNO9RksTbS_-ZRA/s320/300008222_10220221843650165_7253346367018698068_n.jpg" width="256" /></a></div><br /><p>Moving Tess back home when covid hit was heartbreaking for many reasons, but the biggest was the loss of Lindsay and Sheila in her everyday life. And mine. Tess and I miss them both terribly. </p><p>So it's National Nurses Week and, while we haven't had any nursing care for Tess since we moved back home from Scarborough, I know both of these women would be here in a minute if I called them and said I needed them. Because that's just who they are. They're nurses. They're friends. They're family.</p><p>They're Sheila and Lindsay. And we love and appreciate them.</p><p>PS While this is primarily a post about two specific nurses, we have had the privilege of having so many excellent nurses care for Tess and we are grateful to all nurses everywhere. We see you! We appreciate you! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXU25VByg-HOz7fIsQWXVoWYmhLzcZq13JpPGkRHTgYNRLQUvLSymu0oIHQP3spRSoJ1sJLP9csa2SFHzTb7YQT2tDPYH6u2OeMd_bMz5MWmNggePfegdw79MvrOc4KAmFGpt6U6wIoYSYxQ7VhX-R8WxHl6LFJ935Prv2EZmmB5HI-zyzgJShRP81yQ/s2560/YouTube-Banner-2023-01.webp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1441" data-original-width="2560" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXU25VByg-HOz7fIsQWXVoWYmhLzcZq13JpPGkRHTgYNRLQUvLSymu0oIHQP3spRSoJ1sJLP9csa2SFHzTb7YQT2tDPYH6u2OeMd_bMz5MWmNggePfegdw79MvrOc4KAmFGpt6U6wIoYSYxQ7VhX-R8WxHl6LFJ935Prv2EZmmB5HI-zyzgJShRP81yQ/s320/YouTube-Banner-2023-01.webp" width="320" /></a></div><br /><p><br /></p>smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-43263800068134182172022-02-01T18:35:00.002-05:002022-02-01T18:52:37.520-05:00Made With Love...<p> I haven't written anything for quite a stretch once again. And if I'm being really honest, I know why.</p><p><br /></p><p>What I'm about to write is going to be the hardest bit of truth telling I've probably ever done. For many reasons. And my fear is (I actually have many fears but this is one of them), that if I don't write this, I will never write anything again. Getting this out, I hope, will feel a bit like unclogging a stopped up drain. Once I get rid of the icky gunk running in circles inside my own head, I'll be free to write about other things once again. </p><p><br /></p><p>Let's hope my theory is correct. With that said, here goes nothing:</p><p><br /></p><p>Nearly two years ago Tess started acting like she wasn't as engaged in the world as she used to be. She didn't react to her people in the same way she always had and she didn't seem super "with it" some of the time. Blake, who was her at-home teacher last year, said to me on a couple different occasions, "Mom, I don't think Tess knows the things she used to know.", to which I would promptly reply with, "It's because you're her sister and she's just being a diva for you!". This was also my excuse for Tess not interacting with people as much; I would say things like, "Oh, she's just mad at you because she hasn't seen you in a while.", or, "She's just mad she's not getting her movie right now.", excuses along those lines. </p><p><br /></p><p>Then, one day something hit me and I began to really watch Tess and her interactions. And I began to think back on the ones I'd been making excuses for, and the one that I could not longer ignore was watching her lack of excitement when Ellie, her Superlove, was with her. What I noticed was that it took an awful lot of time and work on Ellie's part to get even a small smile or giggle from Tessie when, all of her life, it would only take seconds. When this hit home for me I called Ellie and asked her if she had noticed anything "off" with Tess. Her response was immediate and everything that I had been trying to ignore for a long time. She said, "Mom, I noticed it over a year ago and have already cried my tears over what's going on with Tessie now." I asked her why she hadn't said anything to me even though she'd heard all of my pitiful excuses over the past year and she said, "Because I think this is a progression of Tess's Rett Syndrome and there's nothing we can do about it so why burden you with something you clearly didn't want to see and couldn't do anything about anyway?". </p><p><br /></p><p>God love our kids and their love for us, am I right?</p><p><br /></p><p>Long story short, Tess has had some pretty significant cognitive decline over the past couple of years. She seems disengaged a lot and even scared at times. She can no longer use her eye gaze device without getting very frustrated and even simple choice questions can be hard for her now, though we still always offer her choices when appropriate and will only make a decision for her when it becomes obvious she cannot. Even her giggles are few these days and when we get them, it's almost like they're coming from someplace distant. I would describe it as though there's almost a veil between Tess and the world. She's there, but not all the way. </p><p><br /></p><p>Once I finally admitted to myself what was happening with her and had a long talk with Charlie about it and confirmed that he also had been noticing it, I scheduled an appointment with her neurologist and Ellie joined us for it. Her neurologist confirmed that she also suspected that is was a progression of her Rett Syndrome and that it would continue like this until Tess either simply was "gone" all the time mentally, or passed away. She likened it to an older person with dementia. That it would most likely progress somewhat like that. </p><p><br /></p><p>I was beyond heartbroken and furious for Tess. After everything this kid has been through and overcome only to have to slowly lose herself and all of the skills she has fought so hard to gain seemed unbelievably cruel to me. </p><p><br /></p><p>Next we called her "team" and had a Zoom meeting with her pediatrician, pulmonologist, neurologist, palliative care team and "Dr Jen" because new decisions about care and specifically, end of life care, needed to made. </p><p><br /></p><p>During this meeting we decided that Tess would not be given CPR or be intubated should she get sick enough to require either of those things. Tess would not be given any different or new seizure meds because the risks now outweighed the benefits and there most likely isn't a med made that will control them regardless since she already has tried so many and they aren't controlled now with taking over 30 pills a day for them. We also decided that Tess would not be taken to the hospital if she got Covid because they felt like her chance of surviving it, even with the vaccines, would be very small and having her die in an ICU room with possibly only one parent present was a hard no for us but that she would go into the hospital if necessary for her "normal" illnesses. Those decisions were made as a team but, as her parents, Charlie and I were devastated to be making them since, in the end, despite recommendations they made, the final decisions were ours alone to make. </p><p><br /></p><p>About a week or so after that meeting, her pediatrician called me and said he needed to see Tessie in person (simply because he hadn't in a while) and offered to come out to the island rather than make us bring her to him on the mainland (that was unusual in the extreme but would make more sense later). </p><p><br /></p><p>He came out near the end of October this year and stayed for about three hours. We discussed everything that we had previously talked about at our big Zoom meeting with everyone as well as about what the neurologist had said about what Tess's future looks like cognitively.</p><p><br /></p><p>I then asked him, "At what point do we not take her to the hospital for even a pneumonia or, say she has a seizure that we cannot stop? Given what we now know and that her future is going to be more and more of her losing her skills, losing her memory and losing even knowing who we are, when do we decide to say that we've put her through enough if we're saving her only so that she can continue to decline? </p><p><br /></p><p>In other words, <i>at what point are we keeping her alive for us rather than her</i>?</p><p><br /></p><p>After a very hard talk (which he knew we needed to have and would be much better had in the safety and comfort of our own home than in his office which is a big part of the reason he came out I suspect) and many tears, we, as a family, have come to the decision that Tess will not go to the hospital again. She has earned the right to stay home and not be poked and prodded anymore in the name of making her better. Because there is no "better" anymore. There is only varying degrees of losses upon losses coming her way. We will fight with meds and breathing treatments here in our home if and when needed, because god knows our home has almost all of what the hospital can offer her anyway at this point, and then we will leave it up to Tess and God to decide when it's her time. And when I told Tess that she would never have to go into the hospital again, she seemed to understand me and was...relieved. (as I said, she is aware <i>mostly </i>but not as much as she used to be and not all the time, so I picked a day to talk to her a little about it when I knew she was having a good day)</p><p><br /></p><p>I have said that I would never give up on Tessie and that I would always <i>ALWAYS</i> advocate for her, but now me advocating looks a whole lot different. It's saying <i>NO</i> when I used to say yes. And to be very honest, it felt like I was almost betraying her until all of her team told me the thing I needed to hear, they told me that we were showing just how much we love and respect Tessie by recognizing that her needs have shifted and we had to shift with them. And we did.</p><p><br /></p><p>We don't know how much time we have with Tessie. Her seizures are getting scary (heart rate going way up and then waaayyyy down quickly as well as a lot of breath holding now) and, of course, there is the fear of covid among other illnesses that she could get. What I do know is that one should never underestimate Tess's Warrior Spirit and so I'm leaning hard into my Faith in God and my faith in Toodle Bug. </p><p><br /></p><p>In the meantime, despite my fears, my <i>NO</i> to the medical interventions I used to say yes to is the strongest show of love I can give her now.</p><p><br /></p><p>And Tessie deserves decisions that come from a place of love, not fear. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEipUcHHSBAiACCgKUtBFc4aYjpqLB43kCeBYNA5CDtUymFoUq27LjgfK7JcowBYqaW3XSdE06w4CLpk7bslKndMb5k1Wp7EMmSJ6Jn7DVItn-OIeI8khqzuKE8d41E9YZmTAmYAgFXlz5A2hQZK-QsrWtpy0GxfcC1K9bjmC6vL_jZbteKBiiHdv5m4jg=s1280" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="1280" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEipUcHHSBAiACCgKUtBFc4aYjpqLB43kCeBYNA5CDtUymFoUq27LjgfK7JcowBYqaW3XSdE06w4CLpk7bslKndMb5k1Wp7EMmSJ6Jn7DVItn-OIeI8khqzuKE8d41E9YZmTAmYAgFXlz5A2hQZK-QsrWtpy0GxfcC1K9bjmC6vL_jZbteKBiiHdv5m4jg=s320" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh9ujoK-3cOHtf-aD4sr-3lUF1j2WiotGylnEwmJ-pVdoiGUCf1_w_j44YvHrlkdwxWnqyg_eMNOCTFWBNc7WvgAkxo204IWju3sOivv7vaAgD6coWOuvuNuvV4A9uckmCYNuXjphauq-NReF-17t2I-GJvu7XwPtDwlF7Bnfg14hymot9TX9Cockwqww=s1600" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/a/AVvXsEh9ujoK-3cOHtf-aD4sr-3lUF1j2WiotGylnEwmJ-pVdoiGUCf1_w_j44YvHrlkdwxWnqyg_eMNOCTFWBNc7WvgAkxo204IWju3sOivv7vaAgD6coWOuvuNuvV4A9uckmCYNuXjphauq-NReF-17t2I-GJvu7XwPtDwlF7Bnfg14hymot9TX9Cockwqww=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-81502726877899103862021-07-25T15:04:00.000-04:002021-07-25T15:04:30.135-04:00Thank You Notes and stuff...<p> I'm just going to start by letting you all know that I am a terrible person when it comes to Thank You notes. I hate to write them because, even though I enjoy writing in general, there's just something about a Thank You note to specific people that ratchets up my anxiety and gets me all awkward and my mind goes blank and it's like I've instantly forgotten how to put words together. </p><p><br /></p><p>Long story short, I avoid feeling like this by simply not writing them. </p><p><br /></p><p>In my defense I am also a person who does not expect a Thank You note when I give a gift and never think twice about it if I don't receive one. I realize I may be in the minority here and that in polite society, Thank You notes are the norm and should be done. </p><p><br /></p><p>I'm still not writing them. </p><p><br /></p><p>That said, this post is going to serve as a Toodles update as well as a sort of Thank You note in blog form. A twofer so to speak. Here we go...</p><p><br /></p><p>My last blog post was about Tessie graduating and all the feels that went with that momentous occasion and I'm here to tell you, it was an awesome day. I had no sadness, no what should have beens, just happiness and pride. A large part of why I was in a good place emotionally/mentally was thanks to my therapist but also to my Yaya and her husband, and to Sheila (our beloved SheShe) and her partner Jim, who made a special trip out to the island to attend graduation with us. Having them here was like having my own personal security blankets in human form. They just make my life better. Full stop. </p><p><br /></p><p>I have to begin by saying that Tess was <i>so good</i> during the graduation ceremony, which was a concern based on her behavior the day before during the practice for it. At practice Tess got bored and basically didn't want to be there when she could be home watching her movie and she let me, and everyone else within earshot know. She got vocal. And loud with those vocals. Ellie was there with us since she was going to push Tess in and out of the auditorium and up on stage when it was time to get her diploma and even she was like, "Tessie, you need to quiet down." But Ellie wasn't being super serious with Tessie and Tess, who can read Ellie like a book, could tell that Ellie thought it was a little bit funny, especially since I was becoming stressed over it, and so proceeded to get even louder. </p><p><br /></p><p>When we left practice I ended up lecturing both Ellie and Tessie about it not being funny and that they both had to take it seriously and that Ellie needed to have a real talk with Tess about respect for her classmates, etc etc. So Ellie had a talk with Tessie (because if Superlove is saying it then Tessie will listen and generally obey) and really reinforced that it was EVERYONE'S special day and that they had ALL worked hard to get there and it was not her turn to "talk". Then we pulled out the big guns and told her that her cousin had worked very hard to become the Valedictorian and that it would be super disrespectful to Drey if Tess was loud and "talking" during Drey's speech. That sealed the deal. Tess adores Drey and wouldn't want to do anything that might make Drey mad or sad. We told Tess she could even fall asleep if she wanted to during the parts she didn't want to listen to but she COULD NOT BE LOUD. </p><p><br /></p><p>She took us at our word and did nap during most of the ceremony but what made me so proud of her that day (among a million other things) was that she woke up when she heard Drey begin her speech and stayed awake for it. She slept again for a bit but woke up for the slide show and was awake (thankfully because I wasn't sure if she would be) to get her diploma. We all commented on how well she behaved and made sure she knew how proud we were of her. And at our school, the Seniors give their stole to a person who has cared for them, loved them, pushed them, and just generally helped to get them to graduation. After much deliberation back and forth (using her talker) trying to decide between Ellie, me, and Sheila, with both Ellie and I assuring Tess that our feelings wouldn't be hurt if she wanted Sheila to have, she ultimately did choose Shiela. Although at one point Bobby was also in the running which cracks me up. At any rate, it was a very special moment when Tess, with Ellie's help, wrapped the stole over Sheila's shoulders. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div><span style="text-align: left;"><br /></span></div><div><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzp7ZXzXTYmvq_j5tnOmpF39UCuBPObFCiQKSrrNrH864IUb1P_qDuhYUvXmIzHAiF0PzGzcEqZDu7a6PdfbA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;">Sheila getting her stole </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzc55PEPtZY7JguPEvXYp4Ne-b7AuKOS-ywn62XiciHPe_rmA9Udj4foaHJbECZ7jJExiQ_XYxoXIoQm-7oWlUjhvxsC68pCbupcTDh7cx3G0YFOB_7Jr8iEc7diSDB9qpL2J1MVDcJmZ2/s640/202973539_10218332383374839_7948151211851480182_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzc55PEPtZY7JguPEvXYp4Ne-b7AuKOS-ywn62XiciHPe_rmA9Udj4foaHJbECZ7jJExiQ_XYxoXIoQm-7oWlUjhvxsC68pCbupcTDh7cx3G0YFOB_7Jr8iEc7diSDB9qpL2J1MVDcJmZ2/s320/202973539_10218332383374839_7948151211851480182_n.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The Graduate!</td></tr></tbody></table><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WdAyhZ3PogJncEKKDHdypL-MduSmLNyLGqpsv6KsIQ1LREK1UBhaprO_PhVZ74vohRWHkUi5xVi9LvRMIoIu-t1E2eXj1KHLtTWhUpmSbuCiCfB99o6IcAuvIqgeM-xI7Zl_ODAbWxMO/s2049/IMG_0004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2049" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0WdAyhZ3PogJncEKKDHdypL-MduSmLNyLGqpsv6KsIQ1LREK1UBhaprO_PhVZ74vohRWHkUi5xVi9LvRMIoIu-t1E2eXj1KHLtTWhUpmSbuCiCfB99o6IcAuvIqgeM-xI7Zl_ODAbWxMO/s320/IMG_0004.JPG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Cousins!</td></tr></tbody></table><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p>We all came to my house for a little, mostly family, gathering to celebrate Drey and Tessie and then got ready for the Grand March. Both girls looked stunning and it's one of my favorite island traditions. Blake stepped in to help push Tess and Tess and Drey got to be side by side with their dads for part of the march. Perfect. (Thank you to Autumn for giving Tess your second place in the lineup in order to make that happen) Then Tess and Charlie did the Father/daughter dance and next was the sweetheart dance. For this dance Tess and Drey chose to do it together with their sisters/cousins. So. Sweet.</p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf7_7LKsURpI4gwd18Yw7H0pRWOuy8SOtr7X5tmT_AIab25pIMBOkjGRulHPqE11iWE5PATvnEEyqPItHjLjfhcKC7UwErKw73rxi7f4JHliDixKRyUex61JHojvXnUUs8M-5wiBfRpufn/s960/201593230_4135227973198482_5941690982750306056_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf7_7LKsURpI4gwd18Yw7H0pRWOuy8SOtr7X5tmT_AIab25pIMBOkjGRulHPqE11iWE5PATvnEEyqPItHjLjfhcKC7UwErKw73rxi7f4JHliDixKRyUex61JHojvXnUUs8M-5wiBfRpufn/s320/201593230_4135227973198482_5941690982750306056_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Grand March walking to meet Tessie</td></tr></tbody></table><br /><br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgehr67EebZHZUqwMaSVKuV1kcyn4fXPorphw7qNeeiQkYSimeGABPv8i6kH9v3RPMGim5yABmyZ2M6jZgk5UZmTrGy5-lU6aWrtAI8pA8OLdppdIZjGa-PGcxkdJUsp1B3N0w61FYvWk2B/s960/201904398_4135228686531744_860351151823333796_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgehr67EebZHZUqwMaSVKuV1kcyn4fXPorphw7qNeeiQkYSimeGABPv8i6kH9v3RPMGim5yABmyZ2M6jZgk5UZmTrGy5-lU6aWrtAI8pA8OLdppdIZjGa-PGcxkdJUsp1B3N0w61FYvWk2B/s320/201904398_4135228686531744_860351151823333796_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Proud Parents! </td></tr></tbody></table><br /><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbKU1pU8YIZIXU4zCEC9jOoiwwclHY6vT3Xa3aGFEjT36NFNkZhkZIwRc_wXcI7rJjUv81hyphenhyphen0p0fRKI4fP1w6LApfCQXiWecCF2e0LCwYSWMElSfC8eNw6EI4hmzgrjeTconLVOhpb-Cyd/s960/204634701_10218332377494692_8733833038551998706_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbKU1pU8YIZIXU4zCEC9jOoiwwclHY6vT3Xa3aGFEjT36NFNkZhkZIwRc_wXcI7rJjUv81hyphenhyphen0p0fRKI4fP1w6LApfCQXiWecCF2e0LCwYSWMElSfC8eNw6EI4hmzgrjeTconLVOhpb-Cyd/s320/204634701_10218332377494692_8733833038551998706_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Grand March (Blake pushing Tessie)</td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdN0425_vrjm6vvTWdgEbB2MAUBSffv7art2qEvDIuSrJHC0R5gRit4cKVhTeGDIf0qbq5muSsHfQNzt21aNmNldGB-ttOhBp-FRiPJvxhxMrxt9cHZanz5nnnhcfhM5Kc_5sgWYz39MpV/s960/203606306_10218332379774749_497263893083218332_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdN0425_vrjm6vvTWdgEbB2MAUBSffv7art2qEvDIuSrJHC0R5gRit4cKVhTeGDIf0qbq5muSsHfQNzt21aNmNldGB-ttOhBp-FRiPJvxhxMrxt9cHZanz5nnnhcfhM5Kc_5sgWYz39MpV/s320/203606306_10218332379774749_497263893083218332_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Father/daughter dance</td></tr></tbody></table><br /><br /><br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7pJ6YPLJlkRkFn0Pagyd9XsG_AraED7mjwjD2lonGue67FUQy2rc56E_uC_L5YqQDJRO2NYJtQckI8xEimArHVbARjfT3AV7rxZ7wsfkL6b1cXMHgnEukBsV_AXDYQVMIEbKRGh5pfGMA/s960/204003967_10218332377414690_3885159850683770579_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7pJ6YPLJlkRkFn0Pagyd9XsG_AraED7mjwjD2lonGue67FUQy2rc56E_uC_L5YqQDJRO2NYJtQckI8xEimArHVbARjfT3AV7rxZ7wsfkL6b1cXMHgnEukBsV_AXDYQVMIEbKRGh5pfGMA/s320/204003967_10218332377414690_3885159850683770579_n.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sweetheart dance</td></tr></tbody></table><br /><p><br /></p><p>All in all, it was a great day though I would be lying if I said I wasn't happy to have it behind me.</p><p><br /></p><p>I did have Senior pics made up of Tessie as well as graduation announcements thaaaaaattt I never mailed out to anyone. I gave a few to family members and addressed the rest to go out and just...never sent them. I'm not sure why but I have no doubt it will make for great fodder for my therapist. ;) lol<br /></p><p><br /></p><p>Even without me sending announcements, Tess received quite a few cards and a fair amount of money from friends and family. Though it's likely not the polite way to say thank you, in blog form, it is in no way less sincere. Each card/gift for her was so so appreciated and I really do THANK YOU if you're reading this and were one of the people who sent one to her. You all know who you are but I am going to name two in particular:</p><p><br /></p><p>First, Ali, who not only worked on/altered Tess's grand march dress for free (with limited time no less) so it would fit her properly, but then gave Tess money as well. Ali, the dress was more than enough and you were the reason she had one to wear so THANK YOU.</p><p><br /></p><p>Second, Liz, who mailed a very sweet note with personalized bracelets-one for Tess with the saying that I always use for her, "though she be but little, she is fierce" engraved on the inside and one for me that had something a little....different...engraved on the inside of it. In her note to me Liz was a little worried that what was engraved on mine might be a little too crass for my taste. Well, Liz, fear not. You nailed it. I love it and have been wearing it constantly. THANK YOU.</p><p><br /></p><p>So this is my update and thank you's all in one. And I'm going to leave you with a quote that I love and that may, or may not, happen to be on that bracelet I was given:</p><p><br /></p><p>"A wise woman once said 'Fuck this shit' and she lived happily ever after."</p><p><br /></p><p>Amen. ;)</p><p><br /></p><p><i>Grand March photo credits to Ashley Weller at Island Boy Mom Photography </i>:) <br /></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p></p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /><br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-80702927503462847102021-06-08T09:26:00.002-04:002021-06-08T09:26:27.013-04:00Tess is graduating....<p>This post is going to be a little bit tricky for me. I aim to be honest but sometimes I do worry, like many do, what people will think when I am honest. I encourage anyone who may find themselves thinking something along the lines of, "She should be grateful!", to allow me grace and to know without a shadow of a doubt, that no one is more grateful than I am that Tess had made it to this milestone. That milestone?</p><p><br /></p><p>Graduation. From High School. </p><p><br /></p><p>WHAT?!?! How is it possible that she is already a Senior and gearing up to graduate??? </p><p><br /></p><p>We are so so proud of her and happy for her and excited for her. Trust me when I tell you that no one has worked harder to reach this moment in their lives than our Tessie Toodles. She has literally fought off death on multiple occasions and won. She has moved from her home for her education and, even though homesick and I'm sure nervous at first, she rolled through the doors of that new school and quickly showed them what she is made of and what she could do. She has had to prove herself time and time and time again to people who underestimated her; from teachers to therapists to doctors to, yes, even her own parents early on (that said, she has also had teachers and therapists who knew she was capable and smart and would expect that from her). Tess has constantly showed up to a life that has been trying to knock her back down only to Rocky up and prove to life that she is the Champ and will do it on her terms thankyouverymuch. </p><p><br /></p><p>So why is this a tricky post to write, you may be wondering?</p><p><br /></p><p>Well, even though all of the above is true and we are excited and proud and happy for her to be graduating, we are also dealing with feelings of sadness and even loss. </p><p><br /></p><p>I have been seeing a therapist since we came very close to losing Tessie in the Spring of 2019 and she assures me that these feelings are totally normal because we are dealing with something call Ambiguous Loss which is when you have the feelings of grief and loss even though the person is still very much alive. Here is a link for anyone interested that gets into much more detail about Ambiguous Loss: <a href="https://en.wikipedia.org/wiki/Ambiguous_loss" target="_blank">https://en.wikipedia.org/wiki/Ambiguous_loss</a></p><p><br /></p><p>We're mourning the things WE'RE missing out on. The relationship she would have had with her cousin who is also graduating this year, the fact that she will never leave home to go make a life of her own, even just the normal the pomp and circumstance that goes along with graduating. Every little detail has to be taken into consideration and thought about and prepared for. Will she have a seizure during something like graduation or the grand march? Should she be on stage the whole time or taken up to get her diploma? Who will push her wheelchair to march her in? And the grand march? A whole other planning session. And yes, it makes me sad. And yes, I'm managing that sadness and feelings of loss with tips and tricks from my therapist. And the one thing that she told me that has helped the most? To remember that two things can be true at the same time. I can be so sad and angry that this is not how it's supposed to be while also being so excited and grateful that Tess has reached this milestone. One does not negate the other. Allow room for both. It doesn't mean I love Tess less or am less proud of her to feel sad that her graduation will look and feel different than her sisters did.</p><p><br /></p><p><br class="Apple-interchange-newline" />And when I see the other moms on social media talking with excitement and a bit of sadness at their baby leaving the nest... that's a very lonely feeling. My baby will never leave. She has no future plans other than to be happy and hopefully healthy for as long as possible. I can't join in and relate to them on any level like I did when Blake and Ellie graduated. When her classmates parents were filling out scholarship forms and college applications with their kids, I was contacting a lawyer to make sure we had legal guardianship and conservatorship over Tess so we can keep her protected. It's just such a bazaar place to be in because it's not supposed to be this way. </p><p><br /></p><p>It's a tough road to be on but it's not a bad road. And when Blake was doing school with Tessie yesterday, they were waiting to start speech therapy and Blake was using the talker to talk to Tess about graduation and how exciting it is and what will happen that day and then she asked Tess: </p><p><br /></p><p>"How do you feel about graduating?". </p><p><br /></p><p>Tess replied, "I feel proud of me."</p><p><br /></p><p>I feel proud of me. Those five words were exactly the perspective I needed to have. Hers. She's not missing out. She's not sad. <b>She's proud of herself.</b> </p><p><br /></p><p>How much more could we ask for? </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj84iwc6O5ICdVwuYYwDpKYo6CL3XBml2o0H1ep6tFfpS-B2F2OPwnCaWPV4im5hZPw5FIjmGuN2fcUs06fGvtbPtto44T0csv5d1dG5LT-IRAUHYTV5OXuvQccj4cKgOxsKvoNqElDlMh4/s1359/188325276_10218156383334948_4848978283642601432_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1359" data-original-width="1359" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj84iwc6O5ICdVwuYYwDpKYo6CL3XBml2o0H1ep6tFfpS-B2F2OPwnCaWPV4im5hZPw5FIjmGuN2fcUs06fGvtbPtto44T0csv5d1dG5LT-IRAUHYTV5OXuvQccj4cKgOxsKvoNqElDlMh4/s320/188325276_10218156383334948_4848978283642601432_n.jpg" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p>smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-67535680267909394752020-06-03T18:40:00.002-04:002020-06-03T18:43:26.266-04:00No "Right" Decision...I debated about whether or not to share what's been going on the past couple of weeks on this blog but I feel like, especially for those in my VH Community that have supported us with our decision to bring Tess to Scarborough to attend the Morrison Center for school, this is the place to put it on the table.<br />
<br />
Long story short...<br />
<br />
We're bringing Tess home. At least for this year.<br />
<br />
The backstory begins and ends with Covid-19. Stupid, dumb, scary, life altering, life threatening covid-19.<br />
<br />
The Morrison Center opened their school up this week to students again. They operate all year long due to the high needs of their students and they're a very small school so can more easily put into practice CDC guidelines for maintaining health and safety for their students. And it was my intention to send Tess this week when they opened back up.<br />
<br />
Then Tess and I had a tele-health visit with her pulmonologist who works at Maine Med and just so happens to also be working with covid patients. When I mentioned to him that Tess's school was reopening, his facial reaction betrayed him before he could even say anything. I could tell he was very surprised to hear this (not a good surprise) and when I went on to ask if he thought it was okay for Tess to return to school if all the CDC guidelines were in place, his immediate response was a very emphatic, NO.<br />
<br />
NO, it was not a good idea to have Tess return to school. NO, there was no way to make it safe enough for her and NO, he will most likely not be supporting her returning to school any time in the near future...including in the Fall.<br />
<br />
He went on to show me statistics and charts of how covid is trending in the country, in the state, and even in each county and what he expected to come given what information he had.<br />
<br />
Honestly, I had become a little numb to the covid fear and had even convinced myself that Tess should return to school so she could have some normalcy in her life again. This "safer at home" lifestyle is not really new to us, but the level it has reached is, and Tess has had some negative effects from it. Increased anxiety and increased severity of seizure activity to name a couple. Not to mention she's not getting in person therapies; it's all done by us now with online guidance from her therapists. For those reasons, I had convinced myself that maybe it would be okay to send her and that the benefits might outweigh the risks given heightened safety measures the school was taking.<br />
<br />
Speaking with the doctor was basically the same as having cold water splashed on my face. It woke me up. I was no longer numb to the fear. It became crystal clear that Tess's risk for getting covid was so high that there was no way that the benefits of going back to school outweighed the risks.<br />
<br />
I thought about continuing distance learning and realized that I could also do that from home and not just here in Scarborough, so I asked the doctor if he thought I should just keep on keeping on here until it was safe for her to finally get back to school in person and where she is close to the hospital and all of her medical care, or, if I should take her home to Vinalhaven where the likelihood of her catching the virus would drop dramatically but she was farther from the major medical help she sometimes requires. Honestly, I was expecting him to say stay in Scarborough.<br />
<br />
He didn't.<br />
<br />
He said he thought we should take her home to Vinalhaven and get her out of Cumberland County where her risk for covid is comparatively so much higher. I then asked him about Tess catching the virus on the island vs. catching it in Scarborough where I could immediately get her to Maine Med. He said that this virus would most likely be so devastating to Tess that he felt very sure it wouldn't make any difference where she caught it, the outcome would be the same no matter what... and that outcome would be terrible. He felt like Tess's best chance to survive the virus would be to take her where we can keep her more isolated and safe. "Take her home" were is exact words.<br />
<br />
He wasn't filled with alarm or fear or being dramatic in the slightest. In fact, he was very calm and even laughed and told me that if he could take his two healthy boys and go to VH, he'd be gone. He was only sort of joking. And that's what got me the most. His calmness and basically just, stating the facts ma'm, attitude.<br />
<br />
Like I said, cold water on my face but the wakeup call I needed.<br />
<br />
I talked to her home health nurses and another one of her specialists who all agreed that taking her out of Cumberland County and home to Vinalhaven was the best thing we could do for her given the information we have.<br />
<br />
I've cried and prayed and gone back and forth and agonized about what the "right" decision is for Tess. She loses so much by not returning to school in person, and technically speaking, this is her Senior year and I wanted it to look a lot different for her. But, alas, I am not Queen of the Universe and cannot control a worldwide pandemic, so I will do the thing I always do when it comes to Tess, try to make the best choice for her and pray I don't make the wrong one.<br />
<br />
Home Sweet Home it is then.<br />
<br />
I've spoken with the Vinalhaven school and told them our plans. Tess will still be a student at Morrison but will continue with distance learning until we, and her doctors, feel like it's appropriate to return. And right now, there's no way to know when that will be.<br />
<br />
Given that, even though we didn't have to, we've opted to terminate our lease early and give up our rental in Scarborough. Sometimes, just because you <i><b>can</b></i> do something, in this case having the VH school continue to pay rent until we can come back with Tess, doesn't mean you <i><b>should</b></i> do it. You've got to be able to look at yourself in the mirror and know that what you're doing is something your conscience can live with. In this instance, ours couldn't live with continuing to have the school pay rent while we're on the island with no idea of when it will be safe to return to Scarborough.<br />
<br />
My heart hurts for Tess and everything this move forces her to lose, but today, during her zoom speech therapy, her therapist asked her if she was excited to be going back home to Vinalhaven and she immediately used her talker to say, "Yeah" multiple times which makes my heart hurt a little less.<br />
<br />
<br />
And given how unbelievably homesick I've been the past few years, if you asked me if I was excited to be going home to Vinalhaven I would say, "Yeah!" multiple times as well.<br />
<br />
I don't know what Tess's future holds but we'll do what we always do and take it day by day and continue to hope that the decisions we are making for her are the "right" ones...even when it feels like there's no "right" one to be made.<br />
<br />
In the meantime, look out VH, we're comin' home!<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZb63zwDUfeaEow7LKe-F-HcIQNJWIA-UaP-a9qNPmsaRwbH25c1YWpIQJY2sg_GAJ4xFI0SarKAUpeY71s68L7a5a2KZ40WW2pAUiUhmTQWWpiUE7DMkrQ-oNvHOrIxUaxqMZc2Y8bqy0/s1600/b74d89a84538a05e61e2692bea7d74a2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="564" data-original-width="564" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZb63zwDUfeaEow7LKe-F-HcIQNJWIA-UaP-a9qNPmsaRwbH25c1YWpIQJY2sg_GAJ4xFI0SarKAUpeY71s68L7a5a2KZ40WW2pAUiUhmTQWWpiUE7DMkrQ-oNvHOrIxUaxqMZc2Y8bqy0/s320/b74d89a84538a05e61e2692bea7d74a2.jpg" width="320" /></a></div>
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-3260121644405234932020-04-28T20:06:00.001-04:002020-04-29T06:54:49.387-04:00The Queen and the Little PrinceWell hello there! It's been a hot minute since I last wrote anything here but what better time than during a worldwide pandemic?!<br />
<br />
There's a lot to get to, not the least of which is that two years ago this April, the hubs fell off our daughter's roof of the house he was building for her and broke three vertebrae in his neck and then the following April (last year), Tess was in the hospital fighting for her life with a superbug pneumonia and came so close to dying that the doctors came in on a Sunday to talk to us about what the coming week would look like and try to prepare us to say goodbye to her by the end of it.<br />
<br />
Spoiler Alert for those of you who may still be readers but aren't family/friends of ours, she defied all odds and lived!!!<br />
<br />
But since it's been so long since I've written anything, and let's face it, the world is a bit of a scary place right now, let's leave the scary parts for another time and start with the good, shall we?<br />
<br />
Good thing number one: Our eldest daughter, Blake, got married last March (2019) in Punta Cana and the hubs and I even managed to finagle our ever faithful She-She (nurse Sheila) into staying with Tess here at home so that we could go!<br />
<br />
Huzzah!<br />
<br />
It was a super fun trip and a good time was had by all. We spent about five days in gorgeous weather at a resort on the beach, and even went on a party catamaran to go snorkeling and meet up with other party people at a sandbar with a dj to dance and drink in the tropical waters.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgawpM88Vh0cz5KC5GWm261D3DrCxbV3c9X0mSb8-BPfpJVIl-3oSW2EzbmfEOFzKqwBgB9Hez0CuLttrPdosvezs0r2-E7ciMky_VtwWgWs_c7D4GDW-6El3vn6GLnDL5egFfXfKVmHgZs/s1600/53419727_10212372860950503_1735948097969717248_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="752" data-original-width="960" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgawpM88Vh0cz5KC5GWm261D3DrCxbV3c9X0mSb8-BPfpJVIl-3oSW2EzbmfEOFzKqwBgB9Hez0CuLttrPdosvezs0r2-E7ciMky_VtwWgWs_c7D4GDW-6El3vn6GLnDL5egFfXfKVmHgZs/s320/53419727_10212372860950503_1735948097969717248_n.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Wedding party catamaran cruise.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAYvSypduMTefYWg792Okb5nomq7EtUrizHc8jBgLbCXz2zezXK0kneONKNulEMaTkq_Bvhr4ZReZCenJgkV9BjxIBWtmoiBrrZwgg5bwFIgmM8GrT5VatGLL8E7jhUtIYaP8cLiE7NqiN/s1600/55632826_10212422598513911_6796814096999120896_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAYvSypduMTefYWg792Okb5nomq7EtUrizHc8jBgLbCXz2zezXK0kneONKNulEMaTkq_Bvhr4ZReZCenJgkV9BjxIBWtmoiBrrZwgg5bwFIgmM8GrT5VatGLL8E7jhUtIYaP8cLiE7NqiN/s320/55632826_10212422598513911_6796814096999120896_o.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Party Sandbar</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyCmC8Ja3EpSWPwq73rsgBO2KJLBY3M5KnQwPYw4dEZw37KyKr1tNtTk2pjivTDbBzqT_c7-jD9_RZ5cypvhIvUHpQHFeENu48I986hWSKsAyDUILYiVhw87PlubL74e3tl6Fg10CGDaFn/s1600/54255163_10212374414589343_1205195109184831488_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyCmC8Ja3EpSWPwq73rsgBO2KJLBY3M5KnQwPYw4dEZw37KyKr1tNtTk2pjivTDbBzqT_c7-jD9_RZ5cypvhIvUHpQHFeENu48I986hWSKsAyDUILYiVhw87PlubL74e3tl6Fg10CGDaFn/s320/54255163_10212374414589343_1205195109184831488_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking her down the aisle.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn0VOWhLdL8AI9pQ8ocQOSuh-HJV4HuBZi8TdfjaW59bZhysVIB99TCkWZHciBx2sXDXbSmFDHOdz4UiPR5ZsVifqG1TrsheNKkiMWWOj2MsZAWMvTRCimWWM_5uxFTRbaLNAtErgiQ7fS/s1600/53747547_10212374172383288_7117334930635358208_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn0VOWhLdL8AI9pQ8ocQOSuh-HJV4HuBZi8TdfjaW59bZhysVIB99TCkWZHciBx2sXDXbSmFDHOdz4UiPR5ZsVifqG1TrsheNKkiMWWOj2MsZAWMvTRCimWWM_5uxFTRbaLNAtErgiQ7fS/s320/53747547_10212374172383288_7117334930635358208_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Found a way to have Tess be in the sisters photo!</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
So. much. fun.<br />
<br />
Good news number two was when said daughter's hubby called me one evening in August to proudly inform me that I was going to become a grandmother in about nine months!<br />
<br />
WHAAAAAAAAA??? I'm too young! I don't knit....or sew...or crochet...and I swear like a pirate. Not exactly grandmother material.<br />
<br />
But I digress.<br />
<br />
I was super excited and the time flew by and here's where it really gets good. We told Tessie she was going to be an Aunt! She was most appropriately impressed with this new status in life and confidently told us that Blake was having a girl whenever we asked her.<br />
<br />
Turns out Tess is not the best prognosticator and at Blake's twenty week ultrasound, we broke the news to Tess that she was not having a niece, but rather a nephew! Wouldn't that be fun?!<br />
<br />
Cut to Tess telling anyone and everyone (using her eye gaze communication device):<br />
<br />
"I don't like that."<br />
<br />
Well gee, kid, don't sugarcoat it.<br />
<br />
Tess has spent the past four months repeatedly finding the button on her talker that says something along the lines of, "My sister Blake got married! I wore a pretty robe. I have some exciting news! I'm going to be an Auntie! Blake is going to have a baby boy.", then immediately going from that to the button that says, "I don't like it!".<br />
<br />
When pressed about what she didn't like, it was confirmed that my little Queen did not want Blake to have a boy and steadfastly remained insistently sour about it for the rest of Blake's pregnancy. We figured that surely once the baby was born and she saw him, she would fall in line like the rest of us and just not be able to resist him and all his baby boy cuteness.<br />
<br />
Dare to dream you daydream believer.<br />
<br />
Gavin Charles made his grand entrance into the world late last week and it's safe to say that Tess had not changed her mind about not liking a boy.<br />
<br />
Thankfully, Blake and Bobby were having the baby near where I am so decided to social distance with us here after discussing all of the island factors with her midwives so we have been so lucky to actually get to spend a little time with Gavin after he was born as well since they didn't want them going straight back to the island after he was born.<br />
<br />
Naturally we're all madly in love and he is the most perfect, alert, strong, and smart baby in the history of the world and all the things that family's feel about their own babies that everyone else rolls their eyes at.<br />
<br />
*Just to be clear, we're right though; He's perfection* ;)<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnidE4IMiHJb_2P3cxt_outYzjbAy0ujQDKnO-D_P8KcZON65OgogpFmkXS91jLYCQgzlLmIgrfkMvVUSuQXJiUnGeqHyVTLIY3zoNBnRNS46F6xu4epRk7ayO28D5qOqiteDHUhZgML_B/s1600/94947233_2286211921674408_1374894425305513984_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnidE4IMiHJb_2P3cxt_outYzjbAy0ujQDKnO-D_P8KcZON65OgogpFmkXS91jLYCQgzlLmIgrfkMvVUSuQXJiUnGeqHyVTLIY3zoNBnRNS46F6xu4epRk7ayO28D5qOqiteDHUhZgML_B/s320/94947233_2286211921674408_1374894425305513984_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I mean, come on. I just can't even. He's too perfect.. </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" data-original-height="1242" data-original-width="1242" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAo10juicUTjUss_Rhv8r8rkR7RdSahZJqVxxA65mvfvEZ8v7OtLxEJ7dJTlJsOcJT16ORjCcXzx4_dhM1ZjKHdH0eQjUSaBZcLW-g6r2zgoUjKrXCqzflzn6Ume7IQZmQYqDpkLtbSdWa/s320/95511953_2681193608831377_9032835893055979520_n.jpg" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So alert. Such wisdom in those eyes. (I don't care who rolls their eyes and groans at my Mimi bragging ;) )</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAo10juicUTjUss_Rhv8r8rkR7RdSahZJqVxxA65mvfvEZ8v7OtLxEJ7dJTlJsOcJT16ORjCcXzx4_dhM1ZjKHdH0eQjUSaBZcLW-g6r2zgoUjKrXCqzflzn6Ume7IQZmQYqDpkLtbSdWa/s1600/95511953_2681193608831377_9032835893055979520_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAo10juicUTjUss_Rhv8r8rkR7RdSahZJqVxxA65mvfvEZ8v7OtLxEJ7dJTlJsOcJT16ORjCcXzx4_dhM1ZjKHdH0eQjUSaBZcLW-g6r2zgoUjKrXCqzflzn6Ume7IQZmQYqDpkLtbSdWa/s1600/95511953_2681193608831377_9032835893055979520_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><br />
<br />
<br />
Then we made our way with him to Tess. She very grudgingly looked at him.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNRMsfYozE7NQnOI8fTSQyTdI1sVVnERbdAVa_hBIKoSU8gVw78KO4SlhyphenhyphenLIqSzf7KTEzHy32qMrIpJgq9_79uqRqAR7yaR4kyowEwrXdHCzL2ZCGRrQxAXx88JoQebAKCQZS7m_yCitfj/s1600/95416227_1109131062819583_8590488453802622976_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNRMsfYozE7NQnOI8fTSQyTdI1sVVnERbdAVa_hBIKoSU8gVw78KO4SlhyphenhyphenLIqSzf7KTEzHy32qMrIpJgq9_79uqRqAR7yaR4kyowEwrXdHCzL2ZCGRrQxAXx88JoQebAKCQZS7m_yCitfj/s320/95416227_1109131062819583_8590488453802622976_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes, yes, there he is. I see him. Now take him and go!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ8Sts4eDhFonb26zjcZNOYYu_Bc7M3oOHa7ZZ99X7IISk8kJdHIl22bHDStKk7ZWUHq5vdgFBkACoyAsM7sLCYGYgSL1e_6nW3xI4uNbedTl-ipEZGiYwUF6vbmOaY0b2SXrVHQa2byXW/s1600/95331791_167223954608102_7943182422110109696_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ8Sts4eDhFonb26zjcZNOYYu_Bc7M3oOHa7ZZ99X7IISk8kJdHIl22bHDStKk7ZWUHq5vdgFBkACoyAsM7sLCYGYgSL1e_6nW3xI4uNbedTl-ipEZGiYwUF6vbmOaY0b2SXrVHQa2byXW/s320/95331791_167223954608102_7943182422110109696_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hoping I'll take him away.</td></tr>
</tbody></table>
<br />
<br />
We asked her if she wanted to hold him. She rolled her eyes.<br />
<br />
We insistently put him in her arms (sort of) and to say she was unimpressed would be a gross understatement.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigEFoHfqWFHs-rQpJKzu55FH1Kc2IrzvJjt2AFsDoXS08uoo-iUIE2kwCBttkoMIQNCMpENSs613Xl4zmi9xYokv6_W4QH6Y4-K-77_JzMYSPJU31TDp-zgm525QiwdkQBnnMocYuII_Qi/s1600/95161745_535846797129782_4525035478432350208_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigEFoHfqWFHs-rQpJKzu55FH1Kc2IrzvJjt2AFsDoXS08uoo-iUIE2kwCBttkoMIQNCMpENSs613Xl4zmi9xYokv6_W4QH6Y4-K-77_JzMYSPJU31TDp-zgm525QiwdkQBnnMocYuII_Qi/s320/95161745_535846797129782_4525035478432350208_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No. Just...no. </td></tr>
</tbody></table>
<br />
<br />
No cute and heart meltingly perfect "Tess meeting her nephew" photos for this kid. Nope. No way. Not a chance. Get this kid away from me were the moments we managed to capture.<br />
<br />
And when she saw Ellie, <b><i>her</i></b> Superlove holding him??!! The shade that kid threw could cool the nation.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih-9Fbq4th6HL4uCql1H_k5X586zf4YiVTDEFJTgaV4oikAdzgmPf6e3YeBrHo20PCeXJTDQcV9l7bc92_LMWqVNmSNm8AuoEpYfm4SnL84FdDI2Sd_ej5p2_onQD-RKfHUm3BLuKs1sZf/s1600/95228741_232633721287989_3341718954128179200_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih-9Fbq4th6HL4uCql1H_k5X586zf4YiVTDEFJTgaV4oikAdzgmPf6e3YeBrHo20PCeXJTDQcV9l7bc92_LMWqVNmSNm8AuoEpYfm4SnL84FdDI2Sd_ej5p2_onQD-RKfHUm3BLuKs1sZf/s320/95228741_232633721287989_3341718954128179200_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a proud Auntie should look like.</td></tr>
</tbody></table>
<br />
<br />
We hoped a good night's sleep might improve her...we'll just call it...attitude...about her nephew.<br />
<br />
We are wonderfully dumb at times, aren't we?<br />
<br />
By late the next afternoon there was a small thaw starting to happen. Her Superlove snuggled on the couch with her and then we tentatively had them both hold Gavin together and Tess even managed to smile.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBx4FCMqJGRlwjleYg0BwiswuZ1FLOEdkinUCFkhLFyPq-RtFySNybNYaNchO7r4gu0m3BHe2dQPXFKPEcIsGyWLo7TaDe2oVN6Fwfbb_Iq4AeBzF1Tt1sy63d5Xb7hug2Emx8SbLfOFXX/s1600/95256327_1125450757811320_4580661962114859008_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBx4FCMqJGRlwjleYg0BwiswuZ1FLOEdkinUCFkhLFyPq-RtFySNybNYaNchO7r4gu0m3BHe2dQPXFKPEcIsGyWLo7TaDe2oVN6Fwfbb_Iq4AeBzF1Tt1sy63d5Xb7hug2Emx8SbLfOFXX/s320/95256327_1125450757811320_4580661962114859008_n.jpg" width="240" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZz5ssxkHG9wzDRtqK17WrI7plsdrWi0Cea-Pk6pWHfyMmHs2tvSfbavYwBbTNVXVSNedGP8exsLBZQDiX1YbittS-9AS0k_LuxJWh0h2nTWALukf0xPiylNRydVDOmx6jGV_YQ1DGE_hg/s1600/94701494_929129734230037_9118510998733455360_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZz5ssxkHG9wzDRtqK17WrI7plsdrWi0Cea-Pk6pWHfyMmHs2tvSfbavYwBbTNVXVSNedGP8exsLBZQDiX1YbittS-9AS0k_LuxJWh0h2nTWALukf0xPiylNRydVDOmx6jGV_YQ1DGE_hg/s320/94701494_929129734230037_9118510998733455360_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Okay, well this isn't so bad maybe. </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<br />
Bump bada baaa!<br />
<br />
And by the time Blake took him to her, a teensy bit of interest could be detected.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S1cA7m5N9tXffXw3m3KXBWxgXYF8djDcGiwJGtNq7PJd0UhlN5IhZsEGG1goMITsa1p_G3q-3PvalzIA0-ea_TFCtQfR-Q-UYQUUPC8nmkzjST1CseEVRkPzbtis-902LC04Nrs2gibs/s1600/95266504_183093499404509_7967700586516709376_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S1cA7m5N9tXffXw3m3KXBWxgXYF8djDcGiwJGtNq7PJd0UhlN5IhZsEGG1goMITsa1p_G3q-3PvalzIA0-ea_TFCtQfR-Q-UYQUUPC8nmkzjST1CseEVRkPzbtis-902LC04Nrs2gibs/s320/95266504_183093499404509_7967700586516709376_n.jpg" width="240" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizHtsXza4BYbaN_zbVjzRB2T_u2TSdrB2jG2dOgwAowoZOVZsf_gY928pRXxDW4EaT22nTpPEE_WA-x4_76LVslv1W-GKpoPeDRkh1CD881W2qjUWXyvZ-qCG1LDzK9Hdm4eKeavh_wfx0/s1600/95263385_515603479318431_4761480171175804928_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizHtsXza4BYbaN_zbVjzRB2T_u2TSdrB2jG2dOgwAowoZOVZsf_gY928pRXxDW4EaT22nTpPEE_WA-x4_76LVslv1W-GKpoPeDRkh1CD881W2qjUWXyvZ-qCG1LDzK9Hdm4eKeavh_wfx0/s320/95263385_515603479318431_4761480171175804928_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Honestly, Oreo has been way more interested in Baby G than Tess has.</td></tr>
</tbody></table>
<br />
<br />
Baby steps, people.<br />
<br />
And this morning Blake took him in to see Tess, aka Aunt T, while she was still in her happy place, otherwise known as her bed, and Tess let him lie next to her and even looked at him and smiled!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-_2ERh32j3W4uHtJ0YMx2SlAFdH27De1tobnvF6a6xhC6JIiiBYWDyTlRTwfAglnkaWGJZoLURPBetHwab5sPCG6JoQ4KiYDCrGPVwQUoicxw-dttW_QiiVGz2J3hE6gQ1T_tRxk9js3p/s1600/94961213_693859991361412_1021265067468914688_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="940" data-original-width="1212" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-_2ERh32j3W4uHtJ0YMx2SlAFdH27De1tobnvF6a6xhC6JIiiBYWDyTlRTwfAglnkaWGJZoLURPBetHwab5sPCG6JoQ4KiYDCrGPVwQUoicxw-dttW_QiiVGz2J3hE6gQ1T_tRxk9js3p/s320/94961213_693859991361412_1021265067468914688_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt T and Baby G. </td></tr>
</tbody></table>
<br />
<br />
Well yee haw, cowboy!<br />
<br />
When my dad and Ann called and I told them about Tess's attitude towards her perfect little nephew, my dad summed it up best when he said, "She knows she's not the queen anymore and doesn't like it."<br />
<br />
Well, let's be real here, she still is the Queen but there's a new and very popular little Prince in town and she's not loving sharing the spotlight...especially with a <b><i>BOY!</i></b> Sheesh!<br />
<br />
Long live the Queen...<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVv-I5pVNSmASIy7cEFyr-32OU7vO2BOiXVNPnxvhAHBAN8EWfvqru_QOUvyr3dxpe8jj5IrzhA35iJdCOVy5QDPGLNnJ1uKF0F_jcVUjM82ADpWoGEH6um_R72edVvHzpXtklWQ3mdkGJ/s1600/75082267_10213902139101501_6496472742001377280_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVv-I5pVNSmASIy7cEFyr-32OU7vO2BOiXVNPnxvhAHBAN8EWfvqru_QOUvyr3dxpe8jj5IrzhA35iJdCOVy5QDPGLNnJ1uKF0F_jcVUjM82ADpWoGEH6um_R72edVvHzpXtklWQ3mdkGJ/s320/75082267_10213902139101501_6496472742001377280_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Found a way to sneak in this pic of her epic Game of Thrones Mother of Dragons Halloween costume. </td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-10633125409046902572019-04-26T17:41:00.001-04:002019-04-26T17:41:16.237-04:00I'm not givin' up....I can't write about the past two weeks with Tess. I just can't. It was unimaginable hell at the time and I'm still sort of reeling from it all.<br />
<br />
The best I can do to try to explain what the past two weeks have been like is this video. I don't normally share such personal pictures of Tess in distress but this is real life and it isn't always smiles and fun and what I would like everyone to believe on Facebook.<br />
<br />
This is life with a medically fragile child who came within inches of losing her life last week to a pneumonia.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzK8lkvwoIkvpHGsrnANxLhPp76M07KtPx15_Ai2S1iPgwam5nNi0jzDgnzUHeZI82cg7MSXaB1TDna9aQpqg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
It's also her fight song. Her fight to get back to us. And thank God she's a Warrior.<br />
<br />
Thank God.<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-65778173345334203452018-11-11T18:52:00.000-05:002018-11-11T18:56:54.669-05:00When Tin meets Yin...In August my back spasmed worse than it had in years. I mean, I was quite literally down and out. And with only a mere four days until I was going to be able to scratch an item off of my bucket list by seeing Billy Joel at Fenway Park, I was in a real pickle.<br />
<br />
Out of desperation I did a google search of DOs (Doctor of Osteopathy) in my area, found one who's website I didn't hate, and made my desperate plea to PLEASE GET ME IN SOON BECAUSE I HURT!!! The good doctor had just had a cancellation and told me to come in the next day for treatment.<br />
<br />
Long story short, she helped me out and even got me out of pain enough to go see Billy Joel. Yay! I have been going to see her almost weekly ever since. It helps calm my fibromyalgia pain to a more manageable dull roar because my body responds really well to OMT treatments and honestly, I just get a kick out of the doctor. She does some energy healing work along with the traditional OMT stuff and, since I am more of a, well let's just say... traditional... girl, the new age energy work stuff makes me chuckle.<br />
<br />
But I have to say that I've even brought Tess to her and have even had her go back about once a month (and just to let you know what kind of person she is, she doesn't take Tess's insurance and knows we can't afford her fee without insurance so helps Tess free of charge). Tess likes the OMT treatments but you can see her really relax with the energy work. I don't know what to tell you. I was skeptical of the energy healing stuff but between Tess and myself, I have to admit that there's something to be said for it. The OMT stuff is where it's at though. If you've never been to a DO for an OMT treatment, GO! You'll thank me.<br />
<br />
Anyway, I digress.<br />
<br />
The good doctor talked me into going to my very first yin yoga class because she said my body and mind was in dire need of help (ya think??) in combatting the physical pain and mental/emotional stress in my life. After much back and forth, I finally agreed after basically begging Ellie to come with me, much like Linus's support blanket. I didn't want to go in alone and look like an idiot without someone who I could look over at and laugh with.<br />
<br />
The reason that I knew I would look ridiculous trying to do any type of yoga is because I don't bend.<br />
<br />
At all. Think of the Tin Man BEFORE Dorothy has oiled him up. I'm just a little less flexible than that.<br />
<br />
My fibromyalgia pain severely limits my movements and flexibility which is in direct contrast to any yoga that I had ever seen. Nevertheless, my doc said this yoga was for people like me so I sucked up my pride, grabbed Ellie (and borrowed one of her yoga mats), and hit the yoga studio one Tuesday morning.<br />
<br />
And just to clarify for those not as yoga savvy as myself (snort), my yoga instructor describes her yin yoga class as, "<span style="background-color: rgba(255 , 255 , 255 , 0.03); color: rgba(0 , 0 , 0 , 0.65); font-family: "helvetica" , sans-serif; font-size: 14px;">A quiet chance to REST. We will be guided safely through a series of specific postures to increase joint mobility and flexibility, reduce chronic pain and create a sense of peace and well being. There are fewer poses per class. Each pose is held for approximately 3-5 minutes allowing you to gently stretch your deep connective tissue and settle into relaxation. This is a class for healing of many physical conditions and illnesses and deep therapeutic shift in your body and your life. It is the perfect complement to the ”yang” or more active practices like Ashtanga yoga, vinyasa yoga and our active lives."-</span><span style="background-color: rgba(255 , 255 , 255 , 0.03); color: rgba(0 , 0 , 0 , 0.55); font-family: inherit; font-size: 14px; font-style: inherit; font-weight: inherit; white-space: nowrap;">Penny K</span><span style="background-color: rgba(255 , 255 , 255 , 0.03); font-family: inherit; font-size: 14px; font-style: inherit; font-weight: inherit; white-space: nowrap;"><span style="color: #232329;">usum, </span></span>so you can see it's nothing too strenuous.<br />
<br />
Unless you're the tin man. Which I repeat, I am.<br />
<br />
Honest to God, I was so nervous about the yoga that I had to keep using the bathroom prior to class. I joked with Ellie that she needed to set her intention before starting and then when she threw it back at me I replied with, "My intention is to not crap my pants. Anything else will just be gravy at this point."<br />
<br />
And so we began by sitting crosslegged at which point I immediately needed help with a bolster so I could sit up straight yet wouldn't tip over No. Joke.<br />
<br />
We then moved into some "deer" or something like that poses and I needed blocks. Then more blocks. And a blanket.<br />
<br />
As I tried to look around without getting caught looking, because you're supposed to keep your eyes on your own mat, I saw everyone, and I'm talking some women much older than me, easily doing these gentle poses. And of course Ellie was like a freakin' pretzel and I could hear her giggling softly as I clumsily and noisily reached for more and more aids to help me in my quest to JUST SIT ON THE FLOOR. As I looked back to my own mat all I could see was what basically amounted to a fortress made of my bolsters, blocks and blankets. You want to talk about feeling stupid and out of place?? Baby, I can tell you some stories!<br />
<br />
Then, god love the instructor, I hear her say, "Just because you can easily do yoga poses does not make you a better person."<br />
<br />
Well, Here! Here!<br />
<br />
But then I hear her say, "Try to soften every part of your body as you relax into the pose." She then lists off all the places to soften "including your face" and it's at this point I realize that I have now put all the effort of trying to hold my pose into my face. I swear to god she must be noticing this and is talking to me. (not too self-conscious, am I?) So I panic and start mentally yelling at myself to relax my face. Relax my face! And the more I try to relax it the more tight it starts to feel. As my face starts to soften (I did it!), I feel my arm start to shake because I have now transferred all of my face stress to my arm. And on and on it goes until the hour is mercifully up and we can leave, yoga mat and pride in hand.<br />
<br />
I am proud to say that I kept going back even when Ellie couldn't and even though I feel like a total idiot every time because it really does help. And the instructor is excellent. She's just very calming and non-judgemental, though I kept her real busy trying to help me get into poses in such a way where I wasn't in more pain those first few classes.<br />
<br />
These days I know when she tells us what pose we'll be doing next what I'll need to help me achieve it so even though I'm still using all those bolsters and blocks (I've even added more to my fortress since that first class if you can imagine it), I can do it without her making a special effort to come help me.<br />
<br />
Of course, brag is a good dog and so with that being said, she told us just last week about getting on our bellies to prepare for the serpent's pose. SERPENT'S POSE?! Are you kidding me?! I haven't been able to lie on my stomach since I was pregnant with Tess and you want me to not only lie on it but then arch up from the floor??<br />
<br />
I wanted to tell her, "Hey, how about Snail's Pose" or "Fetal Position Pose"? I'm sure I could manage one of them.<br />
<br />
But I just looked up at her and the panic in my eyes must have given me away because she looked right at me and said, "Stay as you are, I'll be over to help you."<br />
<br />
I'm not even embarrassed anymore. I was just thankful to know I wasn't going to be trying to be a serpent.<br />
<br />
So while everyone struck up off the floor from their bellies, I was on my back with not one, not two, but three bolsters and four blocks supporting my, maaaayybeeee 10 degree curve. Yup. Still not embarrassed.<br />
<br />
Just call me the tin man.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYjgcEj6jEa_EgdTdy95v1Hx6aOQtB0QbtR5tInPc0MgX3hI_zFS3AGBKtZbne6-7IGmNprV8puYCQTsU4IzUqo8j-V6X7VGDn6mYgSB14yM8c2zW3EM0MFnpL_O_EFbRwiaki__WfEKNQ/s1600/3726074734a48f6c369daabe8c056f18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="697" data-original-width="501" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYjgcEj6jEa_EgdTdy95v1Hx6aOQtB0QbtR5tInPc0MgX3hI_zFS3AGBKtZbne6-7IGmNprV8puYCQTsU4IzUqo8j-V6X7VGDn6mYgSB14yM8c2zW3EM0MFnpL_O_EFbRwiaki__WfEKNQ/s320/3726074734a48f6c369daabe8c056f18.jpg" width="229" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-60289457395386332452018-10-02T17:57:00.001-04:002018-10-02T18:14:07.302-04:00Reality Bites...A week ago yesterday Tess got sick. Very sick.<br />
<br />
Like one minute she was good and then...bam!<br />
<br />
And naturally this would happen on a day that I was orienting with a new home nurse for her. The poor girl walked through our door at 7am expecting to get Tess up and ready to take to school for the day and instead got a crash course on how to help Tess manage her cough, fever, heart rate and respirations. It wasn't pretty.<br />
<br />
We spent the whole day moving Tessie to try to get her to cough because I knew her left lung was filling up. We did many breathing treatments, cough assist airway clearance treatments, and a whole lot of suctioning.<br />
<br />
But Tess continued to get worse. By the time Sheila came to help get Tess to bed for the night I had already called her pediatrician and pulmonologist for advice. Her pediatrician called in an antibiotic for her while warning me that it was most likely too late for it to work, and Sheila worked really hard to help Tess move that god awful junk in her lung. She and I did discuss taking Tess to the ER that evening but, and this makes me really angry, we knew that Tess just wasn't "sick enough" yet and we'd be sent right back home. What they don't understand is that by basically making Tess prove that she is sick enough to be admitted, she will have had just enough time for it to turn into pneumonia.<br />
<br />
I was up a lot Monday night to try to help Tess breathe easier. I had hooked her up to oxygen and, by early Tuesday morning, was horrified to see her heart rate in the 150s, oxygen in the low 90s despite being on almost 4 liters of supplemental o2, and her respirations were between 70 and 80 breaths per minute. By 7am, when her nurse for the day got to the house, I had already given Tess her breathing treatments and knew we had to get her to the ER pronto. I quickly showered, packed up Tess's med bags, and called 911 while her nurse kept working on her. (If we had been on the island I honestly believe that they would have life flighted Tess off the island. She was in that much trouble).<br />
<br />
Scarborough ambulance arrived within just a few minutes, packed Tess up, and loaded her into the ambulance and confirmed that I wanted to be taken to Maine Medical Center in Portland. I rode in the back with Tess.<br />
<br />
The ER nurses, docs and respiratory therapists got busy and had drawn blood and done a chest xray before an hour was up. Her blood work showed an elevated white count and that it was bacterial while her xray showed a total white out of the left lung. She was immediately put on three strong antibiotics that covered everything from community acquired to aspiration pneumonia. During this time poor Tessie just felt miserable. She was also requiring deep suction using a nasal catheter and her oxygen dropped alarmingly at times. I was later told they suspected that her lung had at least partially collapsed.<br />
<br />
By this point Charlie had gotten from the island to the hospital and helped soothe Tess while I excused myself to step out of her room for a minute for fear of bursting into tears in front of Tessie. I just couldn't handle seeing her struggle like that. It broke my heart.<br />
<br />
After a consult with the pediatricians on call upstairs in the Barbara Bush Children's Hospital wing, it was determined that Tess should go to the PICU rather than the regular floor since she needed a lot more help and attention and basically a nurse ready to help at all times. They did tell me that they felt like, while yes, she was very sick, that she was being placed in PICU for the extra nursing help more than that they felt like was was in need of Intensive Care. Sort of like a mid-level of care. More than the regular floor could provide but not as intensive as the PICU made it sound.<br />
<br />
During all of this, while still in the ER, they did an ultrasound of Tess's chest to be sure that she didn't have a pulmonary effusion on top of the pneumonia. They were very concerned at the fact there was literally no air movement in her left lung. Thankfully, no effusion was found.<br />
<br />
Tess did okay her first few days in PICU. Tons of breathing treatments, meds and just top notch care but she was still sicker than I've seen her. In fact, I made a point to tell all of her doctors that very thing. They all kept saying that her xray looked very similar to her xrays from her past two admissions for pneumonia and I kept telling them that, no, this time was very different because the past couple of times Tess was admitted, she was not requiring oxygen, wasn't feverish much, and was just better all the way around symptomatically. This time I needed a freakin' ambulance just to get her safely to the hospital from house which was only a ten minute drive away. I needed them to hear me.<br />
<br />
This time was different.<br />
<br />
One of the pulmonologists came in to talk about possibly doing a bronchoscopy and bronchial wash to help move all of the mucus plugs out of her lung but was concerned that, since she would need to be intubated for this procedure, and she was so sick, that he may not be able to take her off of the breathing equipment when it was over and thus would weaken her overall condition and we would have to make the decision on possible end of life care. He recommended helping Tess fight this on her own first and if and when the time came that she needed to be placed on a breathing tube due to her not being able to keep fighting on her own, that we would revisit the bronchial wash at that time since we would have nothing to lose at that point.<br />
<br />
On day three Tess spiked a fever and just generally looked like crap for a kid who had been on steroids and three antibiotics for three days. It was also the highest her fever had been throughout this whole illness. Not good.<br />
<br />
More xrays were ordered asap as well as another chest ultrasound (neither showed any new problems thankfully) which didn't really help us answer why the sudden fever but also let us know that she wasn't physically getting worse. We discussed the possibility of switching to even stronger antibiotics but in the end decided to stay the course to see what Tess would do.<br />
<br />
By Friday night she was well enough to be moved to the regular peds floor and by late Saturday was able to be weaned off the oxygen.<br />
<br />
She was discharged late yesterday but here's the thing, she is still very sick. As in, I have never seen her discharged from the hospital this sick. Like, I would normally be taking her IN to be seen like this, not home after being treated and discharged.<br />
<br />
As scary as it is to think about, this may be her/our new reality. Tess was diagnosed with neuromuscular respiratory failure several years ago and, as her pulmonologist said to me before she was discharged yesterday, Tess is at the age where the disease starts to take hold which could explain why this particular pneumonia hit her so hard and she isn't recovering the same way she has in the past. Last night was long and she needed some help managing her mucus and oxygen. She is acting scared at times because she can't catch her breath when coughing. Her oxygen and heart rate are still all over the place and she may need more oxygen at home now as part of her norm.<br />
<br />
Frankly, it sucks. I'm hoping against hope that she just needs more time to heal up and will bounce back and be back to HER NORMAL baseline soon and that this is a temporary hurdle.<br />
<br />
My gut has been saying otherwise. I don't think she's even close to being out of the woods with this pneumonia but god, I'm praying that I'm wrong. There are times she is looking so good and I'm like, Yes! She's kicking it! And then she's back down to low 02 stats and choking on her cough.<br />
<br />
And if this does end up being the "new normal", all I can say about that is....<br />
<br />
Reality bites.<br />
<br />
But I'll leave you with this pic that her nurse took of her today when she looked so good because, dang, this kid is a freakin' Warrior!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3toL_qeVUrp-JgImQIFB7Uajvs7ARbEijaE2r0RLyJpCR9yW1GfcFQ4H6abbnaDbho0ffnl0oRu966Mxx5P1vCrpNqdhnMRACa2E-vlQbgwZyB7htI-fs9C5PL2pq_Zg-RiO-jaV2TKql/s1600/43012732_688764671507184_2767308494657814528_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3toL_qeVUrp-JgImQIFB7Uajvs7ARbEijaE2r0RLyJpCR9yW1GfcFQ4H6abbnaDbho0ffnl0oRu966Mxx5P1vCrpNqdhnMRACa2E-vlQbgwZyB7htI-fs9C5PL2pq_Zg-RiO-jaV2TKql/s320/43012732_688764671507184_2767308494657814528_n.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4sxikuNwXZLx21Nuyzqe0M6PSlVuUX_mPkz90f5SlKAchFDBKUXVuN2Jm4wbhE1YU2UNU2r4SFAFGCSqIdSTKFatEn831BGN95-u6MWSjtm2TBMb6KT2-ooN4W1jCLYiRWoIEMFWyS05q/s1600/42855190_1868386306572896_221398189649952768_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="843" data-original-width="843" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4sxikuNwXZLx21Nuyzqe0M6PSlVuUX_mPkz90f5SlKAchFDBKUXVuN2Jm4wbhE1YU2UNU2r4SFAFGCSqIdSTKFatEn831BGN95-u6MWSjtm2TBMb6KT2-ooN4W1jCLYiRWoIEMFWyS05q/s320/42855190_1868386306572896_221398189649952768_o.jpg" width="320" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com4tag:blogger.com,1999:blog-9107348500321352911.post-37020278323712228262018-08-22T18:40:00.004-04:002018-08-22T18:47:52.423-04:00Just another day in the life of Rett Syndrome....I woke up this morning at my usual time of 6-ish, got up and opened the house up for Tess's home health nurse to arrive at 7. When Lindsay got here we proceeded to go about our usual routine of getting Tess to the side of her bed, one person holding her while the other washed her and put on deoderant, briefs, bra, shirt, pants, etc. Then we transferred her together to her transport wheelchair that we keep upstairs so that Tess could begin her breathing treatment regimen.<br />
<br />
I brushed her hair and put on her favorite movie as Lindsay got out the cart of equipment. And I do mean cart. It holds Tess's nebulizer, suction, cough assist, and chest vest.<br />
<br />
Lindsay started with the usual xopenex via nebulizer to help open up Tess's airways as I wandered off to get myself somewhat presentable to take Tess to school by 8:30. After the xopenex came the hypertonic saline, again via nebulizer, and last, the dornase via nebulizer. The dornase is a medicine that is given to kids who have cystic fibrosis. Tess does not have CF but her lungs get "gummy" and can develop mucus plugs that lead to pneumonias similar to what happens to the lungs of a child who does have CF. All of this takes about 30 minutes or so.<br />
<br />
Next is the cough assist. It's basically a machine that forces Tess to cough in order to move the crap that sits in her lungs by throwing pressured air down into her lungs then forcefully sucking it quickly back out. It's not pretty and it's not fun and Tess hates it. But man, that particular piece of equipment has quite literally been a lifesaver for Tessie. Then she gets 2 puffs from her flovent inhaler.<br />
<br />
She gets this every day, twice a day when she is well. We do it 4 times per day when she is sick.<br />
<br />
While all this is going on, Lindsay (or myself if I don't have a nurse on any given day) will mix up Tess's anti-seizure meds. 14 pills gets crushed and pushed into her gtube. FOURTEEN. And that's just the morning's dose. She'll get another 6.5 at 2pm and still another 16 at bed time. That's 36.5 anti-seizure pills per day.<br />
<br />
Her seizures are not controlled despite all of that.<br />
<br />
After her morning breathing treatment today, just as we were finishing up and getting ready to start the process of getting her on the chair lift and then into her real wheelchair that stays downstairs, Tess went into a seizure.<br />
<br />
Lindsay called to me and we began timing. This was a big one. Her breathing was affected, her heart rate shot up to 160 beats per minute and she was drenched in sweat. We gave rescue meds at 4 minutes and again at 12. She still continued to seize. She finally stopped at about the 20 minute mark.<br />
<br />
Needless to say, Tess spent the rest of the day in bed while I continued to hear heart alarms as she twitched from the after affects of all of those meds that had been pushed into her little body.<br />
<br />
Tonight her temperature is slightly elevated and her heart rate is still a little too high for her so now wait to see if it's all after affects of this morning's seizure or was the seizure actually a sign that something worse is brewing. Time will tell.<br />
<br />
I'll also get to spend the rest of the night worrying about SUDEP.<br />
<br />
Just take a second to imagine that. And then imagine it happening on a regular basis.<br />
<br />
This is one small part of what goes on in the day of the life someone with Rett Syndrome.<br />
<br />
This is just part of the reason I am fundraising for Rett Syndrome. No kid should have to go through this, especially considering how close we are to finding a cure. Please consider donating to <a href="http://events.rettsyndrome.org/site/TR/Strollathon/General?team_id=1074&pg=team&fr_id=1114" target="_blank">Tess's Team Page</a>. (hover over Tess's Team and it will link you to her page or you can copy and paste the link below into your search bar). We are grateful for ANY amount you can give. And please consider sharing either this blog post or the link to Tess's Team Page on your own social media accounts! Thank you! :)<br />
<br />
http://events.rettsyndrome.org/site/TR/Strollathon/General?team_id=1074&pg=team&fr_id=1114<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrExzzeMXC9eCjMMN5fDIc3nqF36Kz5Mgnrc2UJrOqKAQF_ylo5ogzXNa0LR6sRtbcT0_sId9JZoiSxghsqmr1YF4mZrJxV7h2vm6qzVu7EPGCi-uYH1G3D0pLYrgCfQxTJmfY-tT8JO2/s1600/file+12.21.03+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrExzzeMXC9eCjMMN5fDIc3nqF36Kz5Mgnrc2UJrOqKAQF_ylo5ogzXNa0LR6sRtbcT0_sId9JZoiSxghsqmr1YF4mZrJxV7h2vm6qzVu7EPGCi-uYH1G3D0pLYrgCfQxTJmfY-tT8JO2/s320/file+12.21.03+PM.png" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9vYAy3_949-c8SYPMMEclV3u_MkxBS8T5E0hYQMgdd7_NmUj3uHsGe0hNdRwndMyMEuzM304XLwtXu9BW2eP3gadDEzx-1jmcTKEjKDFK8G9YfQqt-cMuW1JXjR_A73gdfi4UE_hRUwCp/s1600/27993291_10209887402055584_7872357340510248_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9vYAy3_949-c8SYPMMEclV3u_MkxBS8T5E0hYQMgdd7_NmUj3uHsGe0hNdRwndMyMEuzM304XLwtXu9BW2eP3gadDEzx-1jmcTKEjKDFK8G9YfQqt-cMuW1JXjR_A73gdfi4UE_hRUwCp/s320/27993291_10209887402055584_7872357340510248_o.jpg" width="240" /></a></div>
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com2tag:blogger.com,1999:blog-9107348500321352911.post-35959345989814760122018-03-14T18:08:00.001-04:002018-03-14T18:08:15.474-04:00The Green Envelope On The Fridge...A couple of week's ago Tess had a check up with her pulmonologist at Maine Medical Center. Knock on wood, the kid has had an amazingly illness free winter in an almost too good to be true fashion. Her doc was very happy with how she was doing, we adjusted some daily breathing treatments, and then things turned pretty serious. <div>
<br /></div>
<div>
He asked me if Tess had had the flu vaccine this winter and I replied absolutely, she had it at the beginning of November (which was a little late for her but with moving off the island, we missed the island clinic one). The doc was happy to hear because, as we all know by now, this year's flu season has been more deadly than most and children like Tessie are hit the hardest. </div>
<div>
<br /></div>
<div>
I told the doc that I had a huge fear of Tess getting this flu in particular due to everything I'd been hearing about the deadliness of it and then asked if he thought I was overreacting with my fear of it. </div>
<div>
<br /></div>
<div>
The short answer? No. I was not. </div>
<div>
<br /></div>
<div>
I then asked the question that haunts my nightmares. If Tess does get this flu, did he think she would survive it. </div>
<div>
<br /></div>
<div>
The short answer. Again, no. </div>
<div>
<br /></div>
<div>
ARGH! </div>
<div>
<br /></div>
<div>
Now before anyone starts to think this guy is a big jerk with no bedside manner, I can assure you he is actually an amazing doctor with a huge heart for these kids and their families. He had even fit us in on a day when he doesn't normally see patients because he wanted to be able to spend an hour and a half with us. Like, he had literally blocked that off in his calendar. He's a good doc and more importantly, a good man. </div>
<div>
<br /></div>
<div>
What he did say, and which I already knew in my heart, was that the chances of Tess surviving this flu were very slim. Especially since Tess's lungs and body have already been throughs so much so it's just not the same as a healthy child getting it. And, even seemingly healthy kids were dying from it. </div>
<div>
<br /></div>
<div>
This led to him bringing up the topic of an Advanced Directive for Tess and if we had one. He knew we had met with Maine Medical's Palliative Care nurse a couple of times in the past and had even filled out paperwork called My Wishes that does deal with end of life care and what that might look like for your child. </div>
<div>
<br /></div>
<div>
When he asked if Tess was still a full code I very emphatically responded with, "YES!" I want every measure to be used to try to save her if she crashes. </div>
<div>
<br /></div>
<div>
He looked at me very kindly and asked me gently did I fully understand what that meant? I was confused by the question because, hello! Of course I knew what it meant....CPR, many, many meds, possible life support (temporarily until she gets strong enough to breathe on her own again), etc.<br /><br />He then asked me if I knew just exactly what CPR entailed. Well, I have watched an awful lot of Grey's Anatomy and have taken several CPR courses so, yeah! Of course I knew.<br /><br />Except I didn't know. Not really.<br /><br />CPR would be painful. Chances are they would break her ribs and sternum. They would push cardiac meds. And if they did manage to restart her heart, chances were very good that this would not be an isolated incident. That it was a sign of her body truly wearing down and would happen again. Maybe not that day or week, but also not too far off. He also said that if they got Tess back, she would most likely need much more help medically speaking than she does now. If Tess ever needs life support due to an illness, that most likely she will never come off of it and would have to live the rest of her life hooked up to a ventilator in order to live. He then added, "And we don't know if we get her back if it's going to be the same girl you know now and in all honesty, I don't think it will be." </div>
<div>
<br /></div>
<div>
I was just shaking my head no the whole time he was talking. No way in hell was I going to allow anyone to hurt Tessie even if it was because they were trying to save her. Not after everything she's been through and would have gone through to get to that point of needing CPR. I couldn't imagine intentionally inflicting more pain on her. Not on my watch. And the bottom line for me, for us, is Tess has EARNED the right, when her time does come, to pass away with ease and as much dignity and comfort that we can give her. She deserves it. It would simply be selfish of us to allow anything else. When I told the doctor that I also said that I can't imagine ever signing a DNR on her. It's like saying "I give up" and I will never give up on Tessie. </div>
<div>
<br /></div>
<div>
He told me there was a form that we could fill out that was a step by step of what we would allow for crisis care for Tess and that we could tailor it to say whatever we wanted. He felt, given the crazy flu season and Tess's fragile health, that we shouldn't hesitate to get one filled out so that it would be in all of her doctor's computer systems and we would have a copy as well. After that, he set up an appointment for us with Palliative Care again and, after dropping Tessie off at school on Monday morning, we went to fill out that horrible, but necessary, piece of paper. </div>
<div>
<br /></div>
<div>
Charlie and I have always said that the quality of Tess's life would always be the most important thing. Tessie has a good life. She loves her life. Her family. Oreo. Her school and friends. If she gets so sick that those decisions do need to be made, then Charlie and I have made them together with only that in mind. That Tess deserves whatever is best for her. Not us. If it was up to me, I would say DO EVERYTHING JUST SAVE HER! But that would be selfish. That would be for me, not for Tessie. And that's just not fair. </div>
<div>
<br /></div>
<div>
In the end Charlie and I opted for a modified Full Code. Do everything you can to save her but no CPR or cardiac meds are to be given. We will not have her hurt even more during a time when she will already be suffering and needs us to be strong for her. We will have her use breathing support if the doctors believe she has a chance of surviving as well as any and all other meds that could help her but that's where we are drawing the line. At that point it will be up to Tess and God. </div>
<div>
<br /></div>
<div>
And I pray we have the courage and strength to remember this if and when this terrible time ever comes. </div>
<div>
<br /></div>
<div>
In the meantime, the Advanced Directive sits in a green envelope that's hanging on our fridge because apparently paramedics are trained to look for them there. As you can imagine, having that staring at you everyday and knowing what's in it brings it's own heartache but I think the bigger heartache would be dishonoring Tess in any way. </div>
<div>
<br /></div>
<div>
But it also sits next to happy things. Life affirming things like Blake and Bobby's Christmas Card and Ellie's Dean's List paperwork along with, on the other side, an art project of Tessie's. </div>
<div>
<br /></div>
<div>
So the green envelope's heartache is lessened with daily reminders of the good stuff in life along with the hope and prayers that it will not need to be opened for a long, long, long time. </div>
<div>
<br /></div>
<div>
<br /><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhntPpYkLQb_Tm-RCUfN0r7HeQGyBBRDrwtKIGZiQr6bSQHQg55_AaZXcgprK2mrLXvTp8wqrI9nGXa-PFd3wXYmVWqPQHnbIOnxw2-heClB_-9FzBmdtjNfgMyJ7IMc4kB47C3KI3akBUR/s1600/29216608_10210086999045384_555979509262712832_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhntPpYkLQb_Tm-RCUfN0r7HeQGyBBRDrwtKIGZiQr6bSQHQg55_AaZXcgprK2mrLXvTp8wqrI9nGXa-PFd3wXYmVWqPQHnbIOnxw2-heClB_-9FzBmdtjNfgMyJ7IMc4kB47C3KI3akBUR/s320/29216608_10210086999045384_555979509262712832_o.jpg" width="240" /></a></div>
. </div>
<div>
<br /></div>
<div>
<br /></div>
smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-86735151250038546032018-03-08T21:07:00.002-05:002018-03-08T21:21:40.129-05:00You've Come A Long Way, Baby...When you first truly understand that your child will have major, lifelong disabilities, it is absolutely devastating. There is just no way to sugar coat it. All of the hopes and dreams that you have for your baby are suddenly crushed beneath the weight of words like, Intellectual Disabilities, Global Developmental Delay, Spastic Quadriplegia, Hypsarrhythmia Infantile Spasms (that eventually will change over to Intractable Seizure Disorder) and so many other terms that just break your heart and, for a while, your spirit. There will be anger and fear and so much sadness that you don't know how you will possibly be able to handle this new world. A world you never in a million years thought you would have to live in.<br />
<br />
You attend more meetings than you could ever imagine and make friends with therapists, doctors, social workers and counselors because they are the people you now talk to the most in this new world. You cry and rage and even try to pretend that it's not as bad as it feels like it is because if you admit it really is bad, it feels like you are betraying your child whom you love with all of your heart.<br />
<br />
You will see other babies and toddlers your child's age and silently compare what your child ISN'T doing. It will hurt so badly because it will make you feel even worse and you are so irrational in your grief that you're almost mad at these babies who are developing "normally". And when you notice that feeling you will give yourself a mental slap because WHO DOES THAT?! And what does it say about you that you, even for a nano second, feel like this? You are lost in a storm tossed sea of emotions. Joy one minute, anger the next, fear the next, and so on and so on until you are sure no one can possibly survive this type of storm. Yet you hear stories every day in your new group of friends of people who, not only are surviving, they're thriving in it. You'll wonder how they ever got to that place and if you ever will.<br />
<br />
You may even avoid bringing your child around other kids their own age or, in my case, ask the people closest to me who had kids Tess's age to not tell me all of the new, fun, and exciting things their kids were doing because I just couldn't take it emotionally. And your true friends and family members will not only understand, they'll go out of their way to try to protect you and make you feel okay about it even though you know it's not okay to ask that of them (forever thankful especially to Kris and Ali for protecting me during those years). Then one day, you'll see those same "normally" developing kids alongside your clearly delayed child and your brain won't compare. You won't marvel at the differences. You won't even feel a little bit sad about it. It won't even be a blip on your radar. You'll be able to not only listen to all of the awesome things your close friends and family members kids are doing, you'll WANT to hear them and go out and support them however you can. You will know in your heart that disability is just a word and that your child is just exactly who they are supposed to be in the world and you will marvel at them and what they have taught you.<br />
<br />
And soon enough those days turn into weeks and then years and you will realize you did survive the storm. You learned how to navigate those rough waters and you mastered the art of sailing through them. It wasn't pretty a lot of the time and you didn't come through the storm the same person as when you got caught in it, but that turns out to be a good thing. And you'll feel pride in yourself and the unimaginably hard work it took to get you there.<br />
<br />
All of this to say that Tess had another wheelchair fitting this week. I remember pretty vividly the absolute devastation I felt when I first heard the word "wheelchair" in regards to Tess. It felt like I had been sucker punched. Like all the air was just sucked out of me. I didn't want her to look different than the other kids and I most certainly did not want her to have to have a wheelchair.<br />
<br />
After I put it off for as long as I could without admitting the real reasons I was putting off to the people who said she needed it, I ultimately picked out the one that looked the most like a baby carriage (since Tess was still small enough not to need a "real" wheelchair just yet). I hated that chair with a vengeance. Even though it was the least wheelchiar-y looking, it was bulky and ugly and obviously made for a child who had special needs. A wheelchair to me meant no hope of her ever walking. It was a symbol of everything I was grieving as I was trying to grope my way through the loss of the baby I thought I was going to have.<br />
<br />
A few years later Tess had grown enough to need another wheelchair. This time the process was much easier. I was years into the Special Needs world at that point and was starting to leave the grief behind most days and only see the good stuff thanks in large part to some really good friends I'd made because of Tessie (shout out to Buh and Kellie!). They came into my life at a time when my faith in God was really being tested and, without judgement or preaching at me, helped bring me closer to God again, and I am so thankful for that.<br />
<br />
At any rate, I picked out a pink chair for Tessie and asked that they embroider her name on the seat back. When the chair came, I still had a pang of, "I can't believe this is my life.", but for the most part, it was just nice to see her in a properly fitted chair. I wasn't happy about it but I wasn't particularly unhappy about it either. More emotionless over the whole thing.<br />
<br />
This past week I went into Tessie's new school where I was met with her PT, her teacher, her aide, and the representative from the durable medical equipment company that we use. This visit was actually fun and full of laughs. I was practical in my decisions of what we needed in a chair (it had to be able to roll easily across more than just pavement unlike her current one, and needed the best possible safety features for van transport).<br />
<br />
Then I looked at Tessie and told her it was time for her to choose her wheelchair colors. She got to pick the color for the edging on the seat back and bottom as well as the frame. After giving her several color choices my little diva decided to pimp her ride with pink edging and an orange frame. I was cracking up at just the thought of what this thing is going to look like. The representative (who has done ALL of Tess's chairs and has known us since she was 2 or so) looked at me and said, "Please don't put those two colors together! Do you have any idea what this will look like?! Let me just make it all pink for her!". I laughed at him and said, "Nope! Tessie gets to choose what she wants in her ride and that's what she chose so make it happen for her!". He was shaking his head and chuckling as wrapped up the wheelchair fitting and I told Tess to have a good day at school then left and drove home; still chuckling to myself over her color choices.<br />
<br />
But here's the real news: I didn't, even for a second, feel bad about this new wheelchair. It didn't even cross my mind to feel sad or mad or any of the other emotions I have felt in the past. I was just proud of Tessie for being so adamant about her color picks. And, I have to admit, control freak that I am, I am pretty proud of myself for not trying to get Tess to change her color choices or, like I would have in years past (and I'm not necessarily proud of this), simply vetoing her choice and getting the colors I wanted.<br />
<br />
Yup, I've come a long way, baby!<br />
<br />
<br />
Side Note: I use the word "you" at the beginning of this post a lot. Obviously the experience of having a child with special needs is different for everyone and I'm not trying to assume that mine is the same as everyone else's though I do think many of us go through a lot of those emotions.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com4tag:blogger.com,1999:blog-9107348500321352911.post-45303188544324199732018-01-13T16:15:00.001-05:002018-01-13T16:16:18.064-05:00Time to BloomSince Tess began school here in Scarborough, her teachers have put her through her paces with what is called "Goal Work". Goal Work is exactly what it sounds like. Tessie works on meeting goals so her teachers can get a feel of where she is at academically. With help from her new teachers, we rewrote Tess's most recent IEP because there were no academic goals in her old one and the girl is <i>crushing </i>everything her teachers are asking of her as if to say, "Pfft, that's all you've got?!".<br />
<br />
And Tess's teachers aren't shy about letting me know how smart Tess is. When it has felt like for so long that you're one of the few people who really knows that, well, I'm here to tell you, it feels pretty dang good. Plus, Tessie is also hearing all of these things said about her and she is so proud of herself that it just about melts your heart to see because people that she wants to work hard for are validating that she is indeed <i>smart</i>. <i>Very smart. </i>She's not just cute and funny and loving and all the nice things that are normally used to describe her.<br />
<br />
Nope, what gets talked about the most by her teachers is how smart and clever she is. (They also say the other nice things but, being teachers, focus more on her academics.)<br />
<br />
She knows all of her numbers, at least 1-10 by sight, she knows all of her letters by sight, she knows her primary colors by sight, and she knows all of her body parts by sight.<br />
<br />
So the next step will be having her work on word recognition (which she has begun to do). For example, one of her goals is to be able to recognize her name when she sees it. They are also working on her being able to recognize the words: Reidy, Mama, Daddy, Blake, Ellie & Oreo. Once those goals are met, new ones for her to be able to recognize functional words will begin. Words like: help, hurt, stop, etc. In other words, Tess will be reading! I'm not sure if she'll ever be able to read more than one word at a time but I have learned not to underestimate this kid so the sky's the limit on where this could take her. Can you even imagine how much bigger her world would be if she could learn to read a book on her Tobii Eye Gaze Device all by herself?! As an avid reader myself, this thought excites me a lot!<br />
<br />
She is also wowing them in Speech and PT. As I told my FB friends the other day, Tessie stood INDEPENDENTLY, with no hands on her and nothing used for balance, during her most recent PT session. It lasted only about 3-5 seconds but she did it! And I think it may be the first time EVER that she has done that. Again, can you imagine your child not being able to stand/walk their whole life without someone giving them nearly total assistance and then one day, bam, they're standing on their own under their own power at fourteen years old?! I don't care if it was for 3 seconds or 3 hours, the kid did it! Of course, when she realized she was doing it her PT said she looked sort of startled as if thinking, "I'm not supposed to be able to do this!", and then buckled her knees.<br />
<br />
I get a little thrill every time I think about her standing up by herself and when Ellie and I asked her about it, she was clearly super proud of herself which makes me even happier.<br />
<br />
Soon, Tess will start having some of her PT sessions at a pool and she will start horseback riding in the spring. I can't wait to see what she amazes us all with next.<br />
<br />
Moving to Scarborough was absolutely one of the hardest and most gut wrenching decisions we have ever made and it's been tough for a lot of reasons, but I can say without hesitation, as far as Tessie goes, it's one of the best things we have ever done for her, not just for her schooling, though that's the reason we moved, but as it turns out, for her own sense of self worth and I can't think of anything more important than that.<br />
<br />
There is a saying that goes, "Bloom where you are planted." Well, we're literally watching Tess blossom and it's one of the best things I've ever seen.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCfLYO9ApjgOmPWxURBIobTxk1M0cRdrKGNKdL4UtxJacs43fWoNGLYkFZzpwyVtrmJugm5Rm5u0JKrjb6_POZ0b-9BTUg_8amdGmGe24saudSD8CXuyBQdLwJ8-Yb5vEF_I9z-uMaZ662/s1600/self-help-quote-hp-2-1.1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCfLYO9ApjgOmPWxURBIobTxk1M0cRdrKGNKdL4UtxJacs43fWoNGLYkFZzpwyVtrmJugm5Rm5u0JKrjb6_POZ0b-9BTUg_8amdGmGe24saudSD8CXuyBQdLwJ8-Yb5vEF_I9z-uMaZ662/s320/self-help-quote-hp-2-1.1.jpg" width="237" /></a></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0n3J3-3Cr9ywDqVHIdOBzR-80ZD8VQDsAaMqXLjInIIR28pBWRyigNYEaa5SIX8Wt6NH-ccMnoDNhgZXXWYSHHzd9R9MZDPAF7-Rlcm-A2OWuWa1n5E1AmC7upXsoFmtxL0L7bFqAPFf0/s1600/2d526cf15ba8db700cafd57a58843f29--be-brave-tattoo-quotes-about-self-worth.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="607" data-original-width="640" height="303" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0n3J3-3Cr9ywDqVHIdOBzR-80ZD8VQDsAaMqXLjInIIR28pBWRyigNYEaa5SIX8Wt6NH-ccMnoDNhgZXXWYSHHzd9R9MZDPAF7-Rlcm-A2OWuWa1n5E1AmC7upXsoFmtxL0L7bFqAPFf0/s320/2d526cf15ba8db700cafd57a58843f29--be-brave-tattoo-quotes-about-self-worth.jpg" width="320" /></a></div>
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com3tag:blogger.com,1999:blog-9107348500321352911.post-48574110660046693372017-12-02T21:24:00.001-05:002017-12-02T21:25:16.309-05:00Burnin' Down The House...I have a pretty big fear of fire. I mean, my guess would be that most of us do, but I am so over the top about it that I am half convinced I was burned at the stake in a previous life. But then, on the other hand, is there anything more cozy and cheerful than a merrily crackling fire? It's quite the love/hate relationship that I have with it.<br />
<br />
There also was the time I kinda, sorta <a href="http://travelswithtessie-toodles.blogspot.com/2010/11/fire-in-hole.html" target="_blank">started a chimney fire</a> in my old house and the fire chief had to tell me to close the doors to the woodstove to shut the air down to it because I had those babies wide open to enjoy the pretty flames. Doh! He then proceeded to come to the house and squirt a fire extinguisher up the chimney for good measure and, while he was at it and much to my acute embarrassment, get a look at my room of horror that used to be the laundry/hoarders room. Good times. Good times.<br />
<br />
Then there was last night. Sheila had just left from helping with Tess and Charlie was on the island working, so it was just me (and Tess upstairs in bed) and I decided I was rather hungry and thought a casein, nitrite, nitrate, gluten free all natural hot dog would really hit the spot. Because doesn't that just sound super appetizing?<br />
<br />
Anyhoo, I got those little suckers frying and ran out to the garage to make sure it was all locked up so any would be ne'er do wells that might be lurking about could not enter my fortress of safety, when all of a sudden the most piercing, shrill sound filled the air.<br />
<br />
Then I heard, between those terrifying ear shattering sirens, "THERE IS A FIRE! GET OUT NOW! THERE IS A FIRE! GET OUT NOW!"<br />
<br />
Well holy smokes, batman! As I ran back up the ramp that goes down from the kitchen into the attached garage, my internal monologue vacillated between, "SHUT UP! SHUT UP! SHUT UPPPPPPP!" (at the alarm), and "OH MY GOD, WHAT IF MY HOT DOGS CAUGHT THE STOVE ON FIRE AND THE KITCHEN IS IN FLAMES?!"<br />
<br />
I raced in to see smoke filling the house, ran to the stove, only to realize in a very anticlimactic way, that the hotdogs were fine but the butter that I had used to cook them in was burned and smoking like crazy.<br />
<br />
I turned off the gas burner, threw the pan of smoking hotdogs into the sink and raced around trying to figure out how to shut of those mind numbing, screaming alarms.<br />
<br />
There were two problems with that plan however.<br />
<br />
1) I had no idea where in the house they were all located yet they were ALL going off.<br />
2) Even if I could locate even one of them, I had no idea how to shut it down.<br />
<br />
So once I realized that plan was a no go, I moved on to Plan B. Because I'm so good in a crisis and all.<br />
<br />
I raced around throwing open the windows and doors, turned on the fans, and prayed my neighbors weren't hearing all of this commotion and calling the fire department.<br />
<br />
All I could picture, as those godforsaken alarms kept screaming at me to "GET OUT NOW! THERE IS A FIRE! GET OUT NOW!", was Scarborough Fire and Rescue racing down my very quiet neighborhood and coming to a screeching halt outside my house only to discover that all I was trying to do was cook some hotdogs. Hotdogs that don't even taste like hotdogs.<br />
<br />
I still haven't told Charlie about it. He often chides me for "cooking everything on high" and I don't want to even hear about it.<br />
<br />
When I ran into Tess's room during all of this commotion to check on her and make sure she wasn't scared, she just looked at me like, "Wow, mom. Wow.", as only a disgusted teenager can look at their parent. I yelled to her over the alarms, "EVERYTHING'S FINE, TOODLE BUG! MAMA JUST BURNED THE BUTTER!" Because I'm sure that despite the smoke, the alarms, and the dog running around in a terrified panic, that my screaming at her as she was trying to fall back to sleep really helped her to relax and feel that sweet inner peace we all crave.<br />
<br />
Alas, my friends, the open windows and doors did their magic, the alarms finally ceased and all was well here on Owens Way.<br />
<br />
And yes, I did go back to that sink and grab those hotdogs and, as I sat stuffing them into my mouth (because I was rather stressed and I am a stress eater), all I could think was, "These were just so not worth it."<br />
<br />
Yet I ate them all.<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-14783936157523928282017-11-17T12:00:00.001-05:002017-11-17T12:00:05.487-05:00Writing a new chapter...<br />
<br />
<br />
Most people know that we have moved to Scarborough in order for Tess to be able to attend a private school that takes only kids with disabilities. Although it may seem very sudden to many of you, this was a decision that has been years in the making.<br />
<br />
<br />
A long time ago, our hometown school's Special Ed Director, who had just been let go, pulled me into her room one afternoon as I was on my way to pick up Tess. She was packing up her room and had wanted to tell me that I NEEDED to take a class in Special Education Law in order to protect Tess and ensure she would get what she was entitled to under the law. Considering that by that point in time, I had already had ample opportunity to see why she made sure to tell me that, I decided she was right and made it a top priority. I signed up, after getting a waiver from the professor who taught it (because my college prerequisites didn't allow for me to take it without a waiver) and it has been, without a single doubt, one of the best things I have ever done as far as taking care of Tess is concerned. If any parents who are reading this have kids with special needs, I'm telling you, TAKE THE CLASS. Know your, and your child's, rights. I cannot emphasize that enough.<br />
<br />
Now for the backstory on how we got here.<br />
<br />
While the class was a massive help and I did know Tess's rights (relatively speaking) and fought year in and year out to try to get even her most basic needs and IEP goals met, it just never seemed to happen. Every year there were promises made to me by the school only to be broken. Then we would start each year from scratch as if none of those previous years promises were ever even discussed. I cannot begin to tell you the stress and frustration of having to go to IEP meetings every year to basically discuss the same things every time and/or be the one looked to to try to create her programming at school. I am her mom. That is way beyond my scope so I asked one of Tess's former therapists, who also happens to be my best friend, to help me write her curriculum. And it still wasn't followed through on by the school.<br />
<br />
Oftentimes, Tess was simply just forgotten about as though she wasn't even a student there. I wouldn't get any notes home, only knew about picture day because of family that had kids there or worked there, and Tess wasn't told about (no notes home) any of the middle school dances (until last year after I had had to have it written into her legal notices that the school needed to be in better touch with me about things that were going on there). One year Tess was not even mentioned with her class (or anywhere else for that matter) in the school yearbook. It was like she just didn't exist there and I have to tell you, it broke my heart for her. (side note: I didn't then, and don't now, in any way blame the yearbook committee for the oversight. Her classroom teacher should have made sure ALL the names of the kids in that class were given). When I mentioned it to the Superintendent (along with a bunch of other issues that we were having) his reply was, "Well, she missed most of the year because she was sick." I reminded him that no, in fact, she missed a few weeks in October of that year due to illness but that she had had to remain out of school because the nurse was no longer working there and they never tried to hire a new one despite my many attempts at asking them to advertise for the position. <br />
<br />
Then there was the issue of the school rarely being ready for Tess to start at the beginning of almost every year and even if they did have a 1:1 for her, the programming for her wouldn't be ready. So many times it was Tess and her 1:1 wandering the hallways trying to find something to do. But every year, we would hope and pray that THIS would finally be the year that things at school would be different for Tess. I'd go to the IEP meeting, leave feeling pretty hopeful about everything we had just discussed, only to be left disappointed before the year was done.<br />
<br />
These are just a few of the many, many things that we've had to battle for every year for Tess, and this past summer, after finding out Tess was left sitting off to the side of the gym, basically ignored, as her 1:1 did work on her laptop and the rest of the gym class was dancing and having fun, then learning things that made us realize we had to pull her out for her own safety, we finally said enough. This kid deserves to be treated better.<br />
<br />
Enter the Morrison Center. The school that Tess is currently attending.<br />
<br />
The decision to uproot our whole lives to move to Scarborough was scary and overwhelming and took us a while to fully wrap our heads around but once we'd finally discussed everything with the administration on the island and they agreed that they just could not provide what Tessie needs, there was no looking back. The school agreed that placement at the Morrison Center was best for Tess so we decided to take a leap of faith and jump in with both feet.<br />
<br />
I'm not going to lie. It's not easy. We put our houses up for sale in order to help with the financial strain we knew this would bring. One of them is our dream home that took us over twelve years to build, on land that was given to us by my grandparents, and is on the water. But, as parents know, there's nothing you won't sacrifice to give your kids a better life. I'm here alone part of the week because Charlie needs to keep working on the island and we don't have full time nursing yet, so he has to keep coming back here to help with Tess. So yeah, it's hard. Then there's the fact that Tessie is a daddy's girl and misses not being able to see him every day. And it's weird for me to not be seeing Charlie every day. Let's be real here, I've been with the man since I was fifteen years old so this is taking some getting used to on my part as well.<br />
<br />
But then we get texts from Tessie's teacher at Morrison and see her great big smile. And we hear her laugh while getting ready for school in the morning as well as when she comes home after school and we ask her about her day. She's honestly the happiest I think I have ever seen her. It's like she feels good about herself, the world around her, and her place in it for the first time in such a long time. Everybody already knows her and calls out to her or comes over to talk with her in the morning when I'm dropping her off and in the afternoon when I'm picking her up. The staff is well trained to work with her and bring out her very best, and that's just what they seem to be doing. Tess is thriving and it makes all the tears, the frustrations, and the sleepless nights worrying if we were doing the right thing for her worth it.<br />
<br />
I want to be sure to say that while I still have some not so great feelings about what has gone in the past with regards to Tess and the school, by placing her at the Morrison Center they are doing right by her now and I am very thankful for it. This was not written to try to make the school or anyone in it look bad, but it would have been very hard to explain such a drastic move without knowing some of the "whys" of why we made this decision and that it's YEARS and YEARS worth of problems and issues, not just last year. We wanted it to work in our hometown school. We really did try our best to make it work there. And I do believe that the people at school cared about Tess but were simply overwhelmed by her needs, both medical and physical. And the kids, especially her classmates, were incredibly sweet and kind and protective of her.<br />
<br />
I also want to make it clear that I want our hometown school to be a great school and to do well. After all, I've still got a kid in there...she just happens to be a teacher. So despite everything that did/did not happen there with Tessie, I'm rooting for the school because there's also a lot of good people trying to do good things there. <br />
<br />
And finally, I do want to be very clear that Tess's therapists (speech & OT) were incredible with Tess and worked hard to try to help her in any way that they could and I'll always be grateful to them for their patience, good humor and love for Tessie.<br />
<br />
Anyway, I digress. Here are some pics and a video taken today, of Tessie at her new school. They make my heart so happy that I could just cry tears of joy for her. This kid is loving her life and feeling pretty good about herself. What more could you want as a parent?<br />
<br />
Let the new chapter of our lives begin. :)<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzhKxe0YVyq05tgY9-KKSahNOrQGrl3NLk9oU5Dww1k_i0dVWg0Lfgzfsj38IbxiDWsv8DMrVMtOF4YF_u95g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKe4LBOVV4uOQuoTxAdO8X2o98VLUVGSm6c6AV8HjJ9FIqqItpQfjOZiBt0KSSoBmyJWKVWZZF2bQJNPp3_aaH6nKi1hPFfxDse127Xx3rCJHd2efIpoKjQdYTjB4nF6ZLSz5c0XEM0vaO/s1600/23379795_10209247066727601_1688688910_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKe4LBOVV4uOQuoTxAdO8X2o98VLUVGSm6c6AV8HjJ9FIqqItpQfjOZiBt0KSSoBmyJWKVWZZF2bQJNPp3_aaH6nKi1hPFfxDse127Xx3rCJHd2efIpoKjQdYTjB4nF6ZLSz5c0XEM0vaO/s320/23379795_10209247066727601_1688688910_o.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0DSjSbDCrzMWzhB5-ucJiELagkNleIgWDBptwkmiBlY2GNQg5qPX4qitXEFeHSPBwapsOBERJoBGi6EOeIH5AI09oBFTB06P8NYvgOEoRlQeywOrhPS3-GfCFME8pat3k-aLpt8GBcDrU/s1600/23469359_10209265736834342_1513775086_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1334" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0DSjSbDCrzMWzhB5-ucJiELagkNleIgWDBptwkmiBlY2GNQg5qPX4qitXEFeHSPBwapsOBERJoBGi6EOeIH5AI09oBFTB06P8NYvgOEoRlQeywOrhPS3-GfCFME8pat3k-aLpt8GBcDrU/s320/23469359_10209265736834342_1513775086_o.jpg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6SlV0tSKXpnweyP4ckLvtQv3yVXeJG8_HHDWRHQQib9uJlhkSptjcH23FdcOxtzsMpA_pruVBQCnUZXCY2GoKw0p3LhoZ3imN4xj1v2muoyKjXhIT_e43NGgIJwPEOa_ekxgRvp8oHA3Y/s1600/23634048_10209301037796844_145069459_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1334" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6SlV0tSKXpnweyP4ckLvtQv3yVXeJG8_HHDWRHQQib9uJlhkSptjcH23FdcOxtzsMpA_pruVBQCnUZXCY2GoKw0p3LhoZ3imN4xj1v2muoyKjXhIT_e43NGgIJwPEOa_ekxgRvp8oHA3Y/s320/23634048_10209301037796844_145069459_o.jpg" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBGf8a_bpSAyy_Eq-ee3Fmm5oVQtiB1s8R9Jk369eXpg9LGU6EbdWc3IOi42_eKn3tFTngOKfC-0qok_4Ssyt6mDZz1qedDufln0Xi3_R4IV_EtiYkmmg_9j42RS3n9PrZWV0EPrROynGF/s1600/23634252_10209301034316757_1356244500_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1334" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBGf8a_bpSAyy_Eq-ee3Fmm5oVQtiB1s8R9Jk369eXpg9LGU6EbdWc3IOi42_eKn3tFTngOKfC-0qok_4Ssyt6mDZz1qedDufln0Xi3_R4IV_EtiYkmmg_9j42RS3n9PrZWV0EPrROynGF/s320/23634252_10209301034316757_1356244500_o.jpg" width="239" /></a></div>
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com8tag:blogger.com,1999:blog-9107348500321352911.post-44732767912739466182017-08-21T18:33:00.001-04:002017-08-21T18:58:19.964-04:00Charlie and Joanna's Excellent Adventure...Well my friends, we did it! We made it to Ireland and Tess did not get sick and the plane stayed up in the air and I lost most, but not all, of my fear of flying with nary a Bridesmaids movie moment of, "There's a woman churning butter on the wing of the plane, there's something they're not telling us!", to be had!<br />
<br />
Huzzah!<br />
<br />
That being said, we wouldn't be us without a few, well, we'll just call them "life lessons", to be had. This is going to be a long one. You've been warned.<br />
<br />
Here we go.<br />
<br />
We decided to leave for the airport early in order to assure plenty of time to find a place to park the car, find our terminal, get our tickets and get thru security. I still say this was a good idea although perhaps, in our, okay, my, OH MY GOD WE HAVEN'T FLOWN SINCE BEFORE 9-11 AND WHAT IF SECURITY DECIDES TO PULL ME ASIDE! frenzy, we may have left a tad too early. Also, as we were cruising down Rt 1 in Boston we saw a sign that said "Logan Express" and both remarked that it seemed odd that google maps wasn't trying to direct us that way which would clearly be a faster route. I mean for crying out loud, the word "Express" was used and so, totally disgusted with how far behind the times google maps clearly was, we went rogue and veered off down that exit marveling at our astuteness. It took about sixty seconds for us to realize that our "exit" was a side street that could let you off at any number of businesses before joining back up with Rt 1 again. Sort of like a detour that you only needed if you needed to access something along that road. "What a stupid sign! This isn't faster, in fact it takes even longer because now we need to try to get back into the regular flow of traffic on Rt1!", I said in total disgust at Boston's obviously dumb sign making skills. Then Charlie saw it. Logan Express. It was a business where you can pay to park your car and they will shuttle you to the airport and back. Alrighty then. I guess the sign makers of Boston were perhaps not so dumb after all and that, just maybe, I was. Maybe. At any rate, Charlie and I had a quick pro/con debate about just using their services rather than trying to find our way around Logan and decided, literally at the last second, that having someone drop us off right where we'd need to be sounded pretty dang good so we flew in there as cars honked at our last minute decision to go careening off the road without warning. Sheesh! What's their problem anyway? If you're not driving like a lunatic in Boston, then you're not driving in Boston. But I digress. I went inside to inquire and found out that parking there was relatively cheap and so wasn't the bus ticket to take us to Logan so after realizing the bus left only once an hour and was taking off in three minutes, Charlie parked the car and grabbed our luggage while I bought the tickets and we made a mad dash for the bus. See? So much more relaxing than driving into Logan ourselves. *snort*<br />
<br />
When we got to the Aer Lingus area I saw a kiosk that Ellie had forewarned me about. I was ready. I strode confidently up to it and got my booking number and proceeded to enter in all the information for both Charlie and myself. Next it asked to see our passports. Ooookkaaayyyy?? So we looked for what would seem like and obvious place to put your passport face down on, placed my passport on it and waited. Nothing happened. I moved the passport around and jiggled and wiggled it to try to get the red light to pick up on it. Still Nothing. I nonchalantly peered over at the guy at the kiosk next to me to see how he was doing it but missed my chance as he was just finishing up. This was starting to take an embarrassing amount of time. Other people were waiting to use the kiosk and even the machine seemed judgy with it's constant, "Do you need more time?" question that kept popping up. So I went back to the wiggle/jiggle method that was clearly never going to work because I wanted to look like I totally knew what I was doing. No problem here, folks. It finally dawned on me that there was another place that perhaps the passport could go. I was sticking mine in the place where the tickets would come out. Yup, I sure was. But in my defense, you need to remember, the last time I flew was in 2001 and a travel agent mailed us our tickets. None of this crazy, new fangled kiosk business. So I finally got thru the whole thing and we were officially checked into our flight. But hold on, not so fast. The dumb kiosk wouldn't print out our tickets. WTF?!?! So it was all for nought and we ended up having to check in at the desk anyway. I should have known right then that we may need to be a little more on our game.<br />
<br />
We got our tickets, went thru security without a hitch and realized we still had three and a half hours before our flight was scheduled to leave. This left an awful lot of time for me to imagine every possible scenario that ended with us going down in a fiery crash. Not good for nerves that were already strung pretty tightly. Thankfully, as soon as I actually got on the plane and in my seat, my nerves all but disappeared. And when the Pilot came on right before take off and said (in a sexy Irish accent no less) a prayer for a safe flight, that just sealed the deal for me and I relaxed. The flight was pretty smooth and before we knew it, we were looking down at the Cliffs of Moher as we were descending into the Shannon Airport.<br />
<br />
We got off the plane, grabbed our luggage and made our way to customs. Our customs agent was a chatty fellow with a thick Irish,aka, sexy, accent. He looked at our passports and asked us how many times had we been to Ireland before? When we answered never he exclaimed, "With a name like Reidy this can't be your first time here?!". This would be something we would hear several times. He then told us about driving and gave us a friendly, yet stern, warning, "Stay on the left. Turns are left, exits are left. You go right, there's only two things that will happen; you'll get totaled or arrested. STAY LEFT." Got it.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7P9ASbjXEhtd5Au7WQyoy_8znz9jdVKNu9tsWN1qiYUs6xwc6QKAp4F5mP8TtpTiIIweJ60Uz4nr5ExdYJwvNFBTJaTnDQlHQjZn_D-XwemDMjmRZLgBLgO7u7Sb-8f0NSClZJJdbUeO1/s1600/20663992_10208694498633744_6227372815714896873_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7P9ASbjXEhtd5Au7WQyoy_8znz9jdVKNu9tsWN1qiYUs6xwc6QKAp4F5mP8TtpTiIIweJ60Uz4nr5ExdYJwvNFBTJaTnDQlHQjZn_D-XwemDMjmRZLgBLgO7u7Sb-8f0NSClZJJdbUeO1/s320/20663992_10208694498633744_6227372815714896873_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">left you say?</td></tr>
</tbody></table>
<br />
Our first stop was to our hotel, which was only about fifteen minutes from the airport which was a good way to ease into driving on the "wrong" side of the car and road. We knew it would be way to early to check in but we needed a place to plan out our day. Our girls had warned us not to give in to the jet lag but oh. my. god. We'd been up for over twenty four hours by that point and I'm a girl who loves to nap on her best day. God Bless the lady who checked us in because she said that if we came back in a couple of hours, our room would be ready (six hours before check in). So we went to find breakfast and walk around. Our hotel was an easy walk to shops, a pub, and Bunratty Castle so it was perfect. We toured the Castle then went back to the hotel and napped for a couple of hours. That night we went to a traditional Irish folk dinner and it was a blast! There was Irish dancing, songs, a skit, and a super funny host that kept everything moving along as we were served a three course meal. It was family style seating so our table had seven other places and wouldn't you know it, the other seven people who sat with us were traveling together and were from Massachusetts. I joked that we'd all traveled to Ireland only to meet people that lived two states away. They were a really fun group of people though and, when they heard our next day would include the Cliffs of Moher, kept quoting from The Princess Bride. Loved it.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdpyhcPM_zIpQd0omQ7nt-MUYXidC_eZSoWl-GWTmQx19fYSLh6I9uxe4bCHmxnQ_pRdr9P3OUDHL12DKAVt8HqS7LbmIvojUCyujweH8H02ZNx_kat7dwqy50TIaikp0RKMWyodOwQPg7/s1600/20638473_10208697958640242_3424888849833345403_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdpyhcPM_zIpQd0omQ7nt-MUYXidC_eZSoWl-GWTmQx19fYSLh6I9uxe4bCHmxnQ_pRdr9P3OUDHL12DKAVt8HqS7LbmIvojUCyujweH8H02ZNx_kat7dwqy50TIaikp0RKMWyodOwQPg7/s320/20638473_10208697958640242_3424888849833345403_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Traditional Irish Dancing</td></tr>
</tbody></table>
<br />
The final course of the evening was bread and each table had one piece of bread that had a gold ring hidden in it and that, as the story goes, the ring would be found by the most deserving person. Because of my stupid Paleo diet, I couldn't eat the bread but by god I wanted that ring. Charlie and I were on the far inside of the table so it was passed down to us almost last. Now, I saw that ring in the bread almost as soon as it hit the table and I watched with bated breath as each person got their bread and didn't realize that the ring was in a different slice. Then it was Charlie's turn and he didn't see it either and almost took a different piece of bread. Well, no way was I going to let that happen! "No, get the other piece!" I whispered in his ear frantically. He looked at me like he does when he's confused by me and I whispered "RING!" I want that ring and it's in the other piece of bread!". So he grabbed the other piece, gave me the ring, and I sat back and basked in my victory. Then the discussion turned to "who got the ring? Did anybody?". So I proudly held it up and said that I had found it. Which was the truth. Mostly. And I do feel like I deserved it the most but only because nobody else even really cared about it and I did. Not sure what that says about me and I don't really care because I got the ring. And that's what counts here.<br />
<br />
As we all got up to leave at the end of the evening the last thing we heard from our new friends was, "Have fun storming the castle!". Ah, one last Princess Bride quote. Just the perfect way to end the night.<br />
<br />
So day two began with Charlie telling me it was my turn to drive. My response was swift and unequivocal. "Trip's over then." I informed him that there was no way on God's green earth that I was going to drive in a country where the speed limit was one thousand miles an hour on roads that were clearly built for a horse and buggy. Also, my eyes were just refusing to send the proper signals to my brain about the whole "wrong side of the road thing." I just couldn't adjust visually to it.<br />
<br />
Since we really didn't want to end our trip on the second morning, Charlie hopped into the driver's seat and we made our way to the Cliffs of Moher. What can I say about that except they're all you would imagine them to be and then some. Absolutely gorgeous. And we met this sweet older couple who were from Ireland but traveled all over the world. We chatted with them for a bit, sat and enjoyed the view for a while and then headed back to, what I will now always think of, as as the death mobile also known as our car.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSpFP0S8Zn5Q_Z4hp0EdgHQI9C57JInfyG3KPtCfK23LWI8zOMMbxXk25aO8AcWVQwJTUtEndfRKFTw4FOVVOBq1tDF6S63iyT0q72Q39JoFEadl1b9FzOQmY4T8uIaK5zgwTfUh-jNsB1/s1600/20840678_10208748338979719_6288179030332656795_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSpFP0S8Zn5Q_Z4hp0EdgHQI9C57JInfyG3KPtCfK23LWI8zOMMbxXk25aO8AcWVQwJTUtEndfRKFTw4FOVVOBq1tDF6S63iyT0q72Q39JoFEadl1b9FzOQmY4T8uIaK5zgwTfUh-jNsB1/s320/20840678_10208748338979719_6288179030332656795_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cliffs of Moher</td></tr>
</tbody></table>
<br />
Friends, I'm here to tell you, driving in Ireland is no joke. And driving on the Wild Atlantic Highway, especially from the Cliffs of Moher, is a ride from hell that will forever leave me with a cold shiver when talking about. The size of the roads are what I would imagine the roads in a Barbie dream world would be like. Tiny. There is barely enough room for two cars to pass each other and there are tour buses that come out of nowhere that careen toward you at death defying speeds and angles. Also, there were constant warning signs about slowing down for bends in the roads and the visual aid on these signs to show you the bends were, in many case, an N or a Z. And they were accurate. Those "bends" were angles that seem like they'd make really good problems in geometry books but not for cars (and don't forget about those tour buses) to navigate. And you need to stay left! As we came out of one road that joined up with another one along our long and winding path down from the Cliffs, I totally and completely lost my shizzle. Like white coats, straight jackets and padded room lost it.<br />
<br />
Charlie pulled out and I screamed in a voice I didn't even recognize, "LEFT! GET LEFT! CHARLIE!!!! LEFT!!!". You know when someone has lost it so incredibly badly that you think that you absolutely must be doing something wrong? Well that was Charlie. He swerved to the other side of the road only to realize that he ALREADY WAS IN THE LEFT LANE which meant he was now in the wrong lane, and a tour bus was hurtling right towards us at breakneck speed. I sucked in my breath as Charlie quickly swung back over to our side of the road. Then he totally lost it. On me. And while he was completely justified in doing so, I mean, I had almost gotten us killed in my weird panic moment, I decided that he was being mean so I got offended and proceeded to act like a sulky teenager. Also because I felt stupid, and rather than feel stupid and mad at myself, much better to feel mad at him. Because I'm a grown up. It took a few hours but we were finally able to laugh about it. Somewhat hysterically but laugh nevertheless. And I will say that my "moment" had officially ended Charlie trying to get me to drive in Ireland considering I couldn't even really make it as a passenger.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE70F51nTrQE4hrg-lkWQ5cuplmLoB-n44SbvHRDV58jA-6bbjw1ESki3dHsSPDfqr0CzznWUbD3k7pzW3KeJAcVBq7hsFIb01DD74r5rL8j4NfKL16_3g_GTqqvyFkYSbM581n0hdvtFL/s1600/IMG_2535.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE70F51nTrQE4hrg-lkWQ5cuplmLoB-n44SbvHRDV58jA-6bbjw1ESki3dHsSPDfqr0CzznWUbD3k7pzW3KeJAcVBq7hsFIb01DD74r5rL8j4NfKL16_3g_GTqqvyFkYSbM581n0hdvtFL/s320/IMG_2535.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seriously, look at this. Does anything about this seem safe to you?</td></tr>
</tbody></table>
<br />
From the Cliffs of Moher we made our way to Galway which is a pretty little town. We ate dinner in an Irish pub with live traditional Irish music. We toured the Galway Cathedral and strolled Shop Street and Quay Street and saw the Spanish Arch. Then it was back to out hotel for the night. This hotel was such a Griswold hotel. We could barely find it on the street (never a good sign). Flights of crappy stairs up to reception and another flight up to our room. The door opens and there is literally just a bed, tv that didn't work, and bathroom. That's it. No place to sit. No closet or mirror. No place for luggage. You literally couldn't open your luggage and walk by the bed at the same time. Also, the head of the bed slanted down at a weird angle. In the morning I opened the bathroom door only to hit Charlie with it, because in order to not be hit by it, you had to be on the bed and he was getting dressed at the foot of it. Then I plugged my blowdryer that I had brought from home (I hadn't needed to use it up until this point because the other hotels provided them) into the outlet converter that we had brought with us. I turned it to high and was a few seconds into the drying process when I heard a super loud whine coming from the motor. I turned it so where the air comes out was facing me and it gave one last extra loud whine, the coils turned a dangerous red, smoke snaked out and it just quit. Poor thing never stood a chance. It was so hot that as we were leaving the room we decided the only safe place to put it was in the sink just in case it actually started to burn. Besides, I'm not sure there was even a trash can it could have gone in. We were pretty happy to say good bye to that place.<br />
<br />
On to our next days adventure! The Aran Islands. We made it safely to the ferry that would take us out to Inis Meain only to discover that the ferry ran two times a day and we had just missed the ten thirty one and the next one wasn't scheduled to leave until six thirty. How's that for irony? Two people whose whole lives revolve around a ferry schedule, never gave it a second thought that, oh, I don't know, other ferries might also have schedules. I'm telling you, the Griswolds really have nothing on us. So we needed to kill about seven hours and didn't have a clue what to do. One of the ferry parking attendants took pity on us and gave us a map and routed out the Ring of Kerry drive for us and told us we had time and it would be worth it. Off we went. Well, sort of. We made it to part of the Ring of Kerry. At least we're pretty sure we did. But we ended up going down some side road and drove thru what we think was a National Park. Because of course. Only we would veer off one of the most famous driving routes in the world only to get lost ramming around some mountainside park and in the end, never actually see the whole Ring of Kerry and not even be sure of what is was we did see. #Griswoldsstrikeagain<br />
<br />
After finding our way back to the main road and stopping for lunch and some souvenir shopping (my most favorite thing ever!), we made it back to the ferry and got ready to board. It was a relatively small boat that took only passengers, no cars. I was expecting a quaint little ten minute ride and what I got instead was one of the rougher ferry rides I've ever had. Forty-five minutes of pure torture. And anyone who knows me knows that this girls doesn't do rough ferry rides. So, yay! Go me! We made it to the island and got a shared taxi to our B&B where we had dinner and then walked around for a while. Again, seriously beautiful scenery.<br />
<br />
By the next morning the wind was blowing even harder (awesome), and the ferry was late (never a good sign) so I was a tad nervous when we boarded for our ride back to the mainland. And I should have been. Rough? Oh yeah. But here's the kicker, I'm used to captains (hi Bub!) who try to make passenger comfort a priority. Not here, baby. It was full freakin' steam ahead and waves be damned! There was one wave where the captain decided he'd better slack back on the throttle but, unlike here where you take the wave and wait a beat before throttling ahead, he slacked back for about five seconds and was like, let's go boys! Full throttle and yee haw! And the best part? They were so casual about it all that people were actually allowed to smoke out on the deck and they were selling beer, coffee and snacks! It was like being in some weird parallel universe! So the boat is rocking and rolling and shuddering on the bigger wave hits and people are like, "Seems like a good time for a beer and a smoke.", while I'm staring wild eyed out of the window literally praying that God makes the next wave smaller pretty please! And what's Charlie doing you ask? He's just sitting there laughing at it all. My near hysteria and frantic grabbing on to him while sucking in my breath from fear, the smoke wafting in, the waves beating against the boat. Oh yeah, he thinks it's all just a regular comedy fest. Good times. Good times.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeP0JyJAEqoOMSzVeiQ012c7hwKUXKK6biSgv77LFjsfnZ1PWfklCzZIzbGgc4WhtI7ZHlLNZH0sMWkk1ase2fd_u2U_yPh4ZoDKrGgQ-uaAW7-PJQDJ0dWELLdIOKrv5hY6oWWQ4RfixB/s1600/20708377_10208712788810987_3381182416012650607_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeP0JyJAEqoOMSzVeiQ012c7hwKUXKK6biSgv77LFjsfnZ1PWfklCzZIzbGgc4WhtI7ZHlLNZH0sMWkk1ase2fd_u2U_yPh4ZoDKrGgQ-uaAW7-PJQDJ0dWELLdIOKrv5hY6oWWQ4RfixB/s320/20708377_10208712788810987_3381182416012650607_n.jpg" width="320" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnWaPs8ZNJCjKuNKwtl5vYYwi0oLFgObLr5skQ_4LfrvqTM1KAuaRS12u6k2UxgGA-XGkv-BLZwPgU-lDDj-4ICUxlymjPMH3N7joaCqMxlUU2iVxbqHt19DdU8AcGf1-B2FM4_Fe6ZqRP/s1600/20708409_10208712788650983_533308501611070366_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnWaPs8ZNJCjKuNKwtl5vYYwi0oLFgObLr5skQ_4LfrvqTM1KAuaRS12u6k2UxgGA-XGkv-BLZwPgU-lDDj-4ICUxlymjPMH3N7joaCqMxlUU2iVxbqHt19DdU8AcGf1-B2FM4_Fe6ZqRP/s320/20708409_10208712788650983_533308501611070366_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All the no's to this ferry ride</td></tr>
</tbody></table>
<br />
<br />
The rest of the trip was relatively uneventful by comparison. We saw the Blarney Castle and Gardens and Charlie kissed the Blarney Stone. We went to Killarney and had a carriage ride thru the park there. By our last night we were beat and went to bed early for an early morning drive to the airport. We very happily handed back the keys to the death mobile, went thru security and customs and once again realized we were about three hours early. What can we say? You just can't teach old dogs new tricks. But you can make them realize that there's time to hit the duty free shop for some last minute souvenir shopping.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UF-ByHmV05Z6fw6NgrGnUfbsLkyX8TvZEV5WrncQLFDNgs9wHtMOb6yp9p5oFN-oeUq50b5_tAftZpV4TT5_cOYTr0H5eaejgLGNEMnB_uo06JMSjQTxDFsAThfXbFKTB36jYNcrSLoH/s1600/20883103_10208750071383028_5172943027302014316_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UF-ByHmV05Z6fw6NgrGnUfbsLkyX8TvZEV5WrncQLFDNgs9wHtMOb6yp9p5oFN-oeUq50b5_tAftZpV4TT5_cOYTr0H5eaejgLGNEMnB_uo06JMSjQTxDFsAThfXbFKTB36jYNcrSLoH/s320/20883103_10208750071383028_5172943027302014316_n.jpg" width="178" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlie kissing the Blarney Stone</td></tr>
</tbody></table>
<br />
The flight home was long but uneventful and we finally made it to Sheila's house to get Tess late Sunday afternoon. I made a beeline for Tess and she very firmly let me know, in no uncertain terms, that she was pissed with me. She refused to look at me or even acknowledge me for that matter. Whenever I spoke she would roll her eyes and then look away. She kept this up for nearly two hours. I finally put her movie on the ipad and crawled into bed with her at the hotel and she gave in and smiled for me and seemed happy to see me and willing to forgive and forget.<br />
<br />
She smiled at her father right away. Punk.<br />
<br />
And so ends the very long tale of Charlie and Joanna's Excellent Irish Adventure.<br />
<br />
<br />
<br />
<span style="background-color: white; color: #545454; font-family: "helvetica" , "arial" , sans-serif;"><b><span style="font-size: x-large;">sláinte!</span></b></span><br />
<h3 class="r" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 18px; font-weight: normal; margin: 0px; overflow: hidden; padding: 0px; text-overflow: ellipsis; white-space: nowrap;">
</h3>
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-30051111447144559602017-07-29T19:37:00.002-04:002017-07-29T19:51:37.779-04:00Traveling WITHOUT Tessie Toodles...My FB friends know that for Christmas our kids along with their boyfriends, a family friend who was once Tess's most beloved (and still is beloved) home health nurse, my dad and my stepmom surprised us with one of the most thoughtful and loving gift's we could have ever dreamt of. Or, in our case, not really dared to ever dream of due to the extreme circumstances that we live under.<br />
<br />
They gave us a trip to Ireland!<br />
<br />
When we opened up the box and I saw the little booklet that Blake had made sitting on the top of traveling goodies, with the cover that read, "You're going to Ireland!", I just started bawling. And my friends, I am NOT a crier. But I just couldn't help it. Charlie and I, who never even get to go out alone together, for even an hour, ever, were going to get to go on an actual REAL vacation.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXmJVDnttwXniDkL_MyApm0-e8JINZMfWq0PI7-niohrDhyphenhyphenjBgFpHt5w63gUrBrYSKY0_Js3kxwprVzJjvTNP3UOg_efEut_GNN0Og_qDGBWloypLu-JhsnGLUHezxOB48fGVKhgROfSI_/s1600/15724680_10210230785598863_8253343058140962628_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1124" data-original-width="899" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXmJVDnttwXniDkL_MyApm0-e8JINZMfWq0PI7-niohrDhyphenhyphenjBgFpHt5w63gUrBrYSKY0_Js3kxwprVzJjvTNP3UOg_efEut_GNN0Og_qDGBWloypLu-JhsnGLUHezxOB48fGVKhgROfSI_/s320/15724680_10210230785598863_8253343058140962628_o.jpg" width="255" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">not the most flattering pic but the one of us after just opening our present</td></tr>
</tbody></table>
<br />
<br />
TOGETHER. ALONE.<br />
<br />
It was seriously almost beyond anything that I could comprehend. It was just so unimaginable. As I said before, it's something we never even dared to dream about doing simply because our lives completely revolve around caring for Tessie and that is a full on twenty four hours a day, seven days a week, job. And because Tess cannot even be left with family members due to all of her medical needs and the fact that she can get scary sick as quick as you can flip a light switch, we just figured that any type of trip together wasn't in our cards and we'd made peace with that. Well, let's be honest, as much peace as you can make in that kind of situation.<br />
<br />
But here we sat, with our amazing, kind, generous, awesome girls looking on with hope in their eyes and voices as they asked, "Are you going to go?", because they were so excited FOR US to be able to go but they also understood that leaving Tess for that amount of time, not to mention, not even being in the same country as her, might be a deal breaker, especially for me.<br />
<br />
To paraphrase the scene from the movie, The Princess Bride (which has the Cliffs of Insanity in it, which in real life are the Cliffs of Moher, which WE ARE GOING TO BE SEEING IN A LITTLE MORE THAN A WEEK), "...only a great fool would turn down the trip of a lifetime, but I am not a great fool so I choose yes, we want to go to Ireland."<br />
<br />
And I cried a little more out of sheer happiness and because our kids had planned this all themselves and worked every angle to make it happen. Not many kids would do so much for their parents with nothing in it for themselves. They were even the ones who had called Sheila (our former nurse) unbeknownst to me to be sure she would be willing to take Tess so we could go. And because Sheila is just the absolute best and loves Tessie, she is taking her vacation time to come stay with Tess along with her boyfriend, Jim, who is also kind and generous and making it a priority to be here to help Sheila.<br />
<br />
You want to talk about feeling blessed? How blessed are we?!<br />
<br />
So we are one week away from the day we leave the island and my anxiety is starting to ratchet up pretty high. I'm scared to leave Tess. All of the what ifs that I live with daily with her are rearing their ugly heads. I'm most scared of SUDEP (sudden unexpected death in epilepsy). I hate the thought of her having a bad seizure and me not being there but, even worse, the fear that that could be the seizure that causes SUDEP and I'm not there. She will be left in the best hands possible next to me (and truth be told, medically speaking, better than me) but that fear is just too big to be able to be reasoned with. For example, I make sure I tell her that I love her every single night at bedtime (even though I tell her this approximately eleventy billion times day) because my fear is that she will die in her sleep from SUDEP and I need to know that the last thing she hears if that should happen is how very, very much she is loved. And if for some reason I forget to tell her that (because there are a lot of steps to putting her to bed), I go back in if I hear her wake up at all to tell her. So yeah, I'm getting anxious about leaving her.<br />
<br />
And the cherry on top of that sucky sundae? I am afraid of flying and have claustrophobia and the thought of feeling like I'm trapped in that airplane for six hours is wreaking havoc on my nerves. I know, I know, I'm a baby. I'm not disagreeing with you. But in my defense, it's a freaking metal can, with wings, way up high. That I can't just take a break from when I want one. Meanwhile, Charlie has absolutely no fear of flying and Blake and Ellie don't have any fears about it so I'm over here like the freak who's all, "I wish they would just have parachutes on the back of every seat. That would make me feel better." Because that would be safe. *rolls eyes at own ridiculousness*<br />
<br />
If you have a fear of flying, or any other fear based thing that you know in your head is completely irrational, I know you can sympathize with me, and if you don't, well, what can I say? Being irrational comes fairly easily to me.<br />
<br />
At any rate, I'm putting my big girl panties on, telling all of my fears to take a back seat and shut the heck up, and getting on that airplane come hell or high water.<br />
<br />
Because Ireland.<br />
<br />
And because Charlie and I never had a honeymoon so there's that.<br />
<br />
And, God willing and the creak don't rise, I'll be home the following week to get the cold shoulder from the Toodle Bug for having the gall to leave her and bragging rights on getting to check off a major item on my bucket list as well as the honeymoon we never got.<br />
<br />
I told Ellie I was going to occupy myself by looking for celebrities. She wasn't very supportive of this idea as she scoffed, "Celebrities in Ireland, mom?" And I said very haughtily, "No, Ell, celebrities on the airplane!" After all, aren't most celebs winging their way to Ireland while flying coach? I see no flaws in my plan at all. And, If I'm a really good girl on the flight, maybe the stewardess will give me a set of airplane wings to pin on my shirt. But if I'm being totally honest here, I keep seeing myself as Kristen Wiig from the movie Bridesmaids when she's on the plane and having a total freakout. It really could go either way at this point.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/upM1R4V9AiE/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/upM1R4V9AiE?feature=player_embedded" width="320"></iframe></div>
<br />
<br />
<br />
Meanwhile, Ireland, vacation, a break from real life....fears or not, it all sounds pretty dang good to me!<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-46449729250971178842017-06-08T18:02:00.000-04:002017-06-08T18:02:42.326-04:00Sweet Surprise...It's been only a little less than two months since we found out that Tessie Toodles has Rett Syndrome and to be perfectly honest, I've been good with the diagnosis and I've been struggling with the diagnosis.<br />
<br />
I explained why I was good with it in my last <a href="http://travelswithtessie-toodles.blogspot.com/2017/04/god-showed-up.html" target="_blank">blog post </a>and I feel just as strongly today as I did when I wrote about it. Even more so since taking Tess to the Rett Clinic at Boston Children's Hospital and going over her whole life's history yet again, only this time with a Rett Specialist. He had asked a genetic counselor to join us to better explain how and why this had happened to Tess and by the end the only really big question I had, other than double checking that Blake and Ellie were at no higher risk of a baby being born with a birth defect than anyone else as well as making sure this wasn't anything that could have been prevented (they're not and it's not), I came back to the question of HOW WAS THIS MISSED?<br />
<br />
You see, in many cases young girls are often diagnosed with Rett Syndrome even with a negative genetic test result because they clinically present has having the symptoms of Rett Syndrome. Tess had nearly every symptom to the point where the geneticists were testing for Rett yet never considered it again once the test came back negative. No neurologists caught it, no geneticists (and mind you, this was at one of the world's best children's hospitals), and no other doctors caught it either. Tess just remained a mystery to us all. <br />
<br />
Which brings me back to the HOW WAS THIS MISSED question. Neither the neurologist nor the genetic counselor could answer it and to be honest, were a bit baffled that Tess had gone this long without someone diagnosing her with Rett. So you see, I stand by my last post because by all accounts, Tess should have been diagnosed years ago but I was spared that until I was much better equipped to handle it. And I am forever grateful for the gift of not knowing until now.<br />
<br />
Yet I am having my moments where I'm struggling with this diagnosis. The "Why my kid?", moments. Plus I've been doing a lot of reading and learning about Rett Syndrome and it's such a brutal disease. It really brings into sharp focus how much damage Rett has done to Tess's body and how very hard she works just to simply exist. I'm reading things that make me overwhelmingly sad for Tess but at the same time, even more proud of her and her warrior spirit than I already was. <br />
<br />
While at the Rett Clinic, the genetic counselor showed us a picture of what Tess's specific mutation looks like. Basically, we saw the exact spot of where it all went wrong. The coding her DNA took out and replaced with other stuff that was wrong. And for some reason, seeing it like that, how close she was to perfectly healthy except for this little blip of broken coding, well, honestly, I just wanted to burst into tears. It all came rushing at me. The years of fear, anxiety, fighting with schools, doctors, insurance companies to make sure she gets what she needs, surgeries, skills not gained, therapies, hospitals. So much damage from such a small error in her coding. And the thing with Rett Syndrome that really broke my heart was reading that the girls KNOW what they want/need to do but their bodies just can't do it and often, the harder they try to get their bodies to do something, the harder it becomes.<br />
<br />
As I said, brutal. I mean, think about the last time you had an itch in a hard place to scratch and how bothersome that was. Now imagine that same struggle for every single thing in your life from wanting to scratch an itch to grab a toy to pet your dog to eating to talking. You KNOW what you want to do but your body simply can't. I can't begin to imagine the frustration, anger and even fear that would make anyone feel. You can't slap the mosquito that's biting you but you can feel the bite. You can't scratch but you can feel the itch. You can't stretch but you feel the cramp. You want to play with the toy but can't make your hand grab it. And this doesn't even take into account uncontrolled seizures, pneumonias, scoliosis, etc, etc, etc.<br />
<br />
If I think too much like this I end up feeling super sad for Tess and that does no good to anyone, least of all Tessie. She's happy and she's not to be pitied. Tessie loves her life. Is there suffering in it? You better believe it. But this kid just keeps smiling and laughing and facing each day, each moment, with a spirit that is to be envied not felt bad for and she keeps reminding me of that with each sassy little smirk or giggle.<br />
<br />
I've also had a tough couple of weeks emotionally because we've had to make the very difficult decision to pull Tess out of school due to some issues we've had there and that has been upsetting. She also has the eighth grade send off tomorrow and I'm kind of dreading it. Tess's school day looks much, much different than the other kids and she really spends very little time in middle school so the "send off" doesn't begin to hold the same meaning for her, but I think it's important for her to participate in this with her classmates and thankfully, Ellie has offered to help Tess so that she can be a part of it. At the same time, it's a visual reminder of just another thing that Rett has robbed from Tess.<br />
<br />
But, as the saying goes, there's always good in every day if you take the time to look for it and in today's mail I got a gift from a Travels with Tessie follower. Ellie laughed and jokingly said, "Your first fan mail, mom!" It was a pretty little cuff bracelet with the words, "though she be but little, she is fierce" stamped into it as well as a very kind and encouraging note. It really lifted my spirits just when I needed it, so Gigi, if you happen to read this post, I'm sending you a great big THANK YOU for the super sweet surprise that couldn't have arrived at a better time. And please tell Mr. K "hello" from me and that I said "Federalism" (he'll get the admittedly very old, joke). :)smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-37265970568797315252017-04-16T19:19:00.003-04:002017-04-16T19:29:52.450-04:00God showed up...I'm a huge movie buff. To the point that I often converse in lines from different movies. One of my favorite lines is from Forest Gump. Remember when Lt. Dan goes to help Forest work his shrimp boat and they can't seem to catch a break (or any shrimp for that matter) and Lt. Dan asks Forest, "Where the hell is this God of yours?", and Forest responds, "It's funny Lt. Dan said that, 'cause right then, God showed up."<br />
<br />
I just love that last line. And it seems appropriate to share on Easter Sunday the information we found out, on Good Friday as it happens, that we've waited Tess's whole life to hear; what makes Tess, Tess.<br />
<br />
But before I get to that I want to remind you of a blog post that I wrote way back when I first started writing the Travels with Tessie Toodles blog. It's the one called, <i><b>Are you there God, it's me, Joanna?</b></i>. (<a href="http://travelswithtessie-toodles.blogspot.com/2010/05/are-you-there-god-its-me-joanna.html" target="_blank">click here to read that post</a>).<br />
<br />
Basically I wrote about God showing up.<br />
<br />
In that post I wrote about some very scary genetic testing that Tess was having done when she was around two years old. How I was basically sobbing hysterically while praying, praying, praying to God, but this time, instead of asking God to "fix" Tessie and make her healthy, I prayed for strength and courage and God's grace to lead me thru whatever may come.<br />
<br />
And God showed up. Those big scary tests? They led to nothing. I had nothing to fear from them. They were not the reason why Tess was like she was. They got repeated several times because Tess seemed like such a candidate for a few of the diseases and the testing was done by some of the best doctors at one of the absolute best hospitals in the world, Boston Children's Hospital. But nope, negative on repeat.<br />
<br />
You can only imagine my relief. All of those scary and horrible things I had read about, I could now let go of and move on to hope instead of despair. The only down side was now we had run out of testing options available to us at that time and had to make some sort of peace with the not knowing. To me, it was a fair trade off. Not know, or know and be absolutely frozen with terror? I'll take option one please and thank you.<br />
<br />
Fast forward to this past Friday. Because I am a firm believer in God's timing, I found it no coincidence that we found out Tess's genetic results on Good Friday. The day God gave his only begotten son out of his love for the world.<br />
<br />
I was nervous when Dr. Craig called and she cleared her throat and said, "I never know how to approach parents with news like this so I'm just going to put it out there."<br />
<br />
Then she told us and my very first thought was "God is good."<br />
<br />
We talked about what it meant for Tess and us as a family and plans that would need to be made at some point as well as more meetings with palliative care and then we hung up. I promptly burst into the big ugly cry because my brain went back to that space I was in twelve years ago when I was praying for strength and courage should one of those very scary tests come back positive. I felt as if no time had passed and I was <i>THAT </i>Joanna again, not the one I've become since. I was scared and sad until Charlie looked at me with tears in his eyes and said, "But what's changed? Nothing. Nothing has changed for us or Tess. We've been living this for almost fourteen years. We already live the scary, the terrible, the horrifying and we're still all okay. But now we know why. And that can only be a good thing."<br />
<br />
And he was so right that my brain snapped right back to the present and I even laughed at how stupid my overreaction was. Although I have to say in my defense, I honestly think it was a type of PTSD response. Like a flashback in time that I just couldn't handle for a minute until Charlie brought me out of it with that one simple question.<br />
<br />
<i>What's changed?</i><br />
<br />
Now you may be wondering how my initial reaction to hearing the news was, "God is good.", when my reaction/mini breakdown was so seemingly the opposite. It's because Tess does in fact have one of those very scary diseases that she tested negative for all those many years ago. And God is good because I was given the <i><b>GIFT</b></i> of not knowing until I was strong enough to handle it. I was shown God's love and mercy because I got all of those years of living with hope instead of waiting in dread for losses. Blake, Ellie and Tessie got the mother they needed and deserved instead of a shell of a mom who was in a state of total devastation. <br />
<br />
Because I was so sick myself at the time, fighting cancer and living with chronic pain, I was already scared. Add a child with a rare and progressive neurological disease into that mix, and I know in my heart, I would have not handled it well. At all.<br />
<br />
God showed up way back then when those tests kept coming back negative and God showed up again on Friday when we did get them and I was in a place where I was strong enough to handle it.<br />
<br />
Tess has <a href="https://www.rettsyndrome.org/" target="_blank">Rett Syndrome</a>. (click on it to learn more if you're so inclined)<br />
<br />
Rett Syndrome is a progressive neurodevelopmental disorder that almost exclusively affects girls and is considered to be a rare disease. Because Tess can't just do things normally, not even in the rare disease category, one of the genetic mutations she has for this has never been reported before. We will meet with a geneticist in July to go over everything in more detail but from everything I've read, Tess is on the severe side. By a lot. But (thank you Charlie) I say again, "What's changed?" It's almost laughable to me now, to think back to the me then and how absolutely terrified I was of the words, "gtube, apraxia, loss of skills, breathing problems, heart problems, scoliosis, seizures, aspiration, etc etc". You know, all the words that are a part of our <i><b>NORMAL</b></i> daily lives now and have been for years.<br />
<br />
Besides the peace of finally knowing, and already starting to find our "tribe" so to speak, in Facebook groups and online sites, I also got a gift I didn't even know I still needed; I did absolutely nothing to cause this and <br />
could have done nothing to stop if from happening. I thought I had made my peace with this a while ago and I basically sort of, kind of, had until Dr. Craig told me that. I literally felt a weight slip off of my heart. I didn't cause this. I didn't hurt my baby. Tess's genetic coding is considered a "spontaneous mutation" and it most likely had already set itself up before I even knew I was pregnant.<br />
<br />
In other words:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
Tess was, in every single way, always meant to be Tess. She is imperfectly perfectly made. And to quote Ellie, "I get a lot of satisfaction from that."<br />
<br />
This also means that Blake and Ellie are not at any higher risk for having a child born with a genetic defect than anyone else. It was just the 1 in 10,0000 luck of the draw.<br />
<br />
I say again, God is good.<br />
<br />
And God showed up and just keeps showing up. And we are blessed. I can't think of a better day than Easter to share Tess's, and our, big news.<br />
<br />
Happy Easter, everyone!<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUT_EtwnAssXfSSuZs4m19a1k3hVfTbMdPn6bLDjKKnl5vPhTxReKURmGFIWLgDIBtbWsktSoKIHkHlA6YKlMkrtSc8br1EQ-0I0vjgdD8dJYspYeW9Y7WVyjrPslAZFFWpnfGp8LvxJVL/s1600/62c7181619d327911dc5a183421336b5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUT_EtwnAssXfSSuZs4m19a1k3hVfTbMdPn6bLDjKKnl5vPhTxReKURmGFIWLgDIBtbWsktSoKIHkHlA6YKlMkrtSc8br1EQ-0I0vjgdD8dJYspYeW9Y7WVyjrPslAZFFWpnfGp8LvxJVL/s320/62c7181619d327911dc5a183421336b5.jpg" width="293" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com5tag:blogger.com,1999:blog-9107348500321352911.post-69135178381133070042017-03-26T20:04:00.004-04:002017-03-26T20:16:50.995-04:00Just another day...I have a confession to make.<br />
<br />
Today was Epilepsy Awareness Day and I didn't even acknowledge it. Some people also refer to it as Purple Day since that is the color for Epilepsy Awareness. They dress in purple and encourage others to as well. Many memes and statistics are posted on social media sites about epilepsy to raise awareness.<br />
<br />
I literally did none of those things. Not one.<br />
<br />
The only real excuse that I have as to why I blew if off is because every day is Epilepsy Awareness Day in my house. And to be honest, I'm sort of over it. I'm tired of it consuming my thoughts. I don't want to wear purple or post information because I already know too much and it's pretty scary. Granted, the posts are to educate those less familiar with it than I am but I just don't want to give it any more of my attention than it already demands from me.<br />
<br />
Tess has had three seizures this week and the shortest one was close to five minutes long which meant rescue meds had to be given during each seizure and her heart rate and oxygen monitored. And bonus, she started a new fun game I like to call Scaring The Ever Loving Crap Out Of Mama. This involves her not taking any breaths during some of the time that she is seizing. As in, not breathing. At all. There was a moment during one of the seizures where I literally shook her by the upper body to try to make her take a breath. And I'm not super proud to admit this but at one point I was saying to her, "You need to breathe Tessie! You're scaring mama!". Because, you know, she was totally in control of what was happening and me saying that would snap her out of it. *snort*<br />
<br />
So yeah, as I was saying, I'm over the whole Epilepsy Awareness thing. God Bless those who are totally into it and show their support but this girl is out. At least for this year. Maybe something will change and I'll have a fresh new attitude for next year like I have in the past.<br />
<br />
Maybe not.<br />
<br />
And let me also defend my sour puss attitude by saying that it seems like every day is an "Awareness Day" for Tess somehow.<br />
<br />
For example:<br />
<br />
Today is Epilepsy Awareness Day.<br />
Yesterday was National Cerebral Palsy Awareness Day.<br />
There is a Feeding Tube Awareness Week.<br />
There is Rare Disease Day.<br />
There is Undiagnosed Day.<br />
There is Scoliosis Awareness Month.<br />
<br />
You can see where I'm going with this, right? I mean, my little Tessie fits all those categories. That averages out to a disease or syndrome every other month, and I'm willing to bet I could find even more for her. (I literally just googled quickly and already found another. Rare Chromosome Disorder Awareness Week. No joke.)<br />
<br />
To all this I'm saying, Enough. I've had enough. How can anyone possibly keep up?<br />
<br />
We are currently waiting on genetic testing that was done on Tess at the end of December. It's the "Cadillac" of genetic testing at this point in time and the neurologist who ordered it is very hopeful that we can finally, after almost fourteen years, get a real diagnosis for Tess. Or at the very least, the testing may reveal something that could point us in a better direction to try to treat her seizures. I have to admit to being excited, and a little scared since sometimes ignorance is bliss, to get the results.<br />
<br />
I'm willing to bet if we do get an "official" diagnosis I will be all over whatever "Awareness Day" is associated with it.<br />
<br />
But for now I'm going to stick with the only "Awareness Day" that totally covers all of the "Awareness Days" mentioned above.<br />
<br />
Her Birthday.<br />
<br />
Lastly, I do want to give a shoutout to all the Epilepsy Warriors (and their families) out there. Not because it's Epilepsy Awareness Day but simply because this journey is unbelievably hard and we deserve a great big pat on the back for getting up every day to face it all again and again.<br />
<br />
And to everyone else all I can say is, if you're lucky enough to never have had to experience seeing a loved one have a seizure, then, as the saying goes, you're lucky enough.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-10062619073002640132017-02-24T18:49:00.002-05:002017-02-25T09:43:34.711-05:00The cost of denial...Last week's surgery was supposed to be simple. So simple in fact, it wasn't even technically considered a surgery; more a procedure. And the only reason her doctor admitted Tess into the hospital following the surgery was because he was worried about all of the things that could go wrong for her post-op due to her many health challenges, not because of the surgery itself. So worried, in fact, that he admitted her into the intensive care unit because, as he put it, "If something starts to go wrong for her, it's going to be a situation that will require a one to one nurse and she just can't get that same attention on the regular floor.".<br />
<br />
Personally, I thought he was being a bit overdramatic considering how minor the surgery was.<br />
<br />
Once again I was right, and I was wrong.<br />
<br />
Tess did superbly after surgery. Sore and tired but otherwise fine. We spent the night in the intensive care unit and by nine the next morning were prepping for her to be discharged with a clean bill of health.<br />
<br />
Then, around eleven, literally an hour before we were walking out of there, Oreo started pacing around Tess's hospital bed and whimpering. She wouldn't stop until I relented and let her up on the bed to check on Tess. And at first that's all I thought she needed to do because she hadn't been able to get close to Tess since prior to surgery and Oreo starts to stress some when she doesn't get regular access and is able to get up close and personal with her girl. Then I <i>really</i> started to watch Oreo interact with Tess and a warning flare went off. Oreo went right up to Tess's mouth, licked at it, paused to stare at Tess, then flopped right on top of her with a heavy sigh. The type of sigh she tends to heave when Tess is in trouble. <br />
<br />
Here's the other thing. As the morning had progressed I thought Tess was starting to look worse rather than better or even the same. But her vitals were good, better than good even. In the words of Tony the Tiger, they were "Great!" No fever, good respirations, normal heart rate. She was smiling and taking her food without any trouble. All the things that I use to determine how she is doing.<br />
<br />
Still, she looked, <i>"off"</i>. And then there was the Oreo thing. I very briefly considered telling all the docs that came by on rounds that I was a little worried, but I had nothing <i>concrete </i>to back up my worry with. I couldn't very well say to them, "Oh, by the way, I know she is doing great and all but I think she looks a little off and her dog alerted on her in that special way she has when the shit's about to hit the fan with Tess."<br />
<br />
Can you imagine how that would have gone over? I could, and preferring to be able to actually leave the hospital rather than be personally escorted to, say, the Psych Ward, I stowed my worry and we left the hospital.<br />
<br />
Cut to us literally being on the ferry and almost home when Tess starts in with a really junky sounding cough. Oh crap. We ended up having to hook up our portable suction in our car to help her clear the junk from her mouth. By six that night Tess was going into full on coughing/retching jags and starting to truly vomit with them.<br />
<br />
This is a bigger deal with Tess than with most kids for two reasons:<br />
<br />
1: Tess had something called a <a href="https://en.wikipedia.org/wiki/Nissen_fundoplication" target="_blank">Nissen Fundoplication</a> surgery done on her when she was four that literally prevents her from being able to throw up, thereby preventing even more aspiration pneumonias. The fact that she was vomiting indicated that the Nissen had let go and now Tess's risk for aspirating and developing an aspiration pneumonia was a lot higher<br />
<br />
2:Tess only gets nutrition thru her <a href="http://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/g-tube/" target="_blank">gtube</a> . It's very regimented and she has very, very little room for error because she would get dehydrated very quickly not to mention she needs the calories and general nutrition. With her vomiting we had to stop feeding her which meant no fluids going in.<br />
<br />
Because of this I immediately called her pediatrician. He thought it was probably post op nausea and agreed to keep her food/fluids off for the night and restart them in the morning but to call him if she developed any other symptoms in the night.<br />
<br />
After we gave her an anti-nausea med, she seemed a lot better. By the next morning she still looked a little off but her vitals were good and she was smiling and "talking". All really good signs so I put her on Pedialyte for a while then switched her back to her regular food later that afternoon. Cut to around six and she was back to vomiting and looking terrible. We had to stop her fluids again. I spoke with "Dr. Jen" (our island doc) and she agreed Tess should be seen the next day so the next morning she stopped by and, naturally, Tess was looking okay. Once again, good vitals, smiling some, and back on her fluids. Jen and I came up with a plan and we felt pretty good about the fact that Tess seemed like she was maybe turning the corner and feeling better.<br />
<br />
By that night we were back to her puking and no fluids. I did the math and realized she had only had in three days, less than the amount of fluids that she normally has in one. Not good. Her heart and oxygen alarm blared all night and by the next morning she was good and truly sick. Scary sick. I got in touch with "Dr. Jen" and told Charlie to expect to be told we had to go to the hospital with her. Jen came by later in the morning and by that point, I was quite scared. Tess was barely able to keep her eyes open and when they were, they would roll up into the back of her head. Her breathing was super shallow, hitched sounding, and too fast. Super high heart rate as well but no fever. Jen had tried to reach the surgeon who had done Tess's surgery but he wasn't on call. So, for only the second time in the four years or so since Dr. Stephenson gave me his personal cell phone number, I asked Jen to call it. Didn't matter that it was Sunday and I knew for a fact he wasn't the pedi on call. Next to Jen, he knows Tess better than anyone else and I needed him to know what was going on. God love him, he called her back (after she had told us we had to go and had sent us on the boat to take Tess to the hospital) and he agreed 100% with her that Tess needed to be seen asap. His big worry besides dehydration? Sepsis. <br />
<br />
Oh. My. God. I hadn't even thought of that and so now it was added to my already super long list of fears for her.<br />
<br />
There were several moments on the ride across the bay that Charlie or I would quickly turn around to check on Tess because we thought she had stopped breathing. I am not even close to exaggerating when I tell you that her breathing was so hitched and shallow that there were times we couldn't even hear it. Jen had given us the option of going by ambulance but we thought Tess would be okay in our car. I need to remember how fast Tess crashes, and once again, I will not make the same choice next time.<br />
<br />
We even looked at each other and said aloud, "We may have waited too long this time." I cannot begin to explain to you what that feels like but I wouldn't wish it on my worst enemy.<br />
<br />
We were scared to death for her. And the guilt for me was so bad because I <i>*knew*</i> even before Jen saw her that she needed to get to the hospital and that we should have taken her on the first boat after the horrible night that she had had. But I wanted her to be okay so badly and to not have to go to the hospital again that I ignored my own gut instincts. So stupid. So so so stupid. Like not enough stupids in the world to tell you how stupid that was of me.<br />
<br />
Long story (very long-sorry about that) short, Tess did in fact get diagnosed with sepsis, pretty severe dehydration, and a lower left lobe pneumonia. She was a very sick girl. She was so sick in fact, that I didn't take even a single picture of her like I normally do when I post on FB that she is in the hospital because I was afraid that her sisters and grandparents would see how very bad she looked and, basically, be as scared as Charlie and I were. (It wasn't until late the next day that I took one with her Superlove and though she is weakly smiling at her sister, all I can see in that pic is how sick she looks. And that was her looking much better than the day before).<br />
<br />
There was talk of transporting her to Maine Med but our local hospital felt like things were still under control and that they would move her quickly if she became any more unstable. They were very comforting and reassured us that everything had been caught early and her prognosis was really good.<br />
<br />
Thankfully, Dr. Stephenson came in on all of his days off to look at "his girlfriend" himself. And even more thankfully, she responded quickly to the IV antibiotics and fluids they were quickly putting into her.<br />
<br />
She stayed in Special Care for four days and got released under the condition that we would call immediately if she developed any symptoms at all, no matter how minor.<br />
<br />
She's still not herself, but she is slowly getting better.<br />
<br />
As for me, my guard is way up and I won't be ignoring my instincts where the Toodle Bug is concerned again.<br />
<br />
And I won't ignore Oreo's either.<br />
<br />
<br />
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-8220934379276924372017-01-14T19:29:00.000-05:002017-01-14T19:29:10.389-05:00Mr. Good Daddy....There is one little story from Tess's most recent stay at the hospital that I haven't really told a lot of people yet. It's one that makes me feel both indignant and ready to burst into laughter in equal amounts, mood depending.<br /><div>
<br /></div>
<div>
Have a seat and enjoy my little tale. I know Charlie did.</div>
<div>
<br /></div>
<div>
As we were sitting there one morning, I believe it was day nine, the woman who had been cleaning Tess's room came in to do her daily routine. It had been Charlie's night to stay at the hospital but we were both sitting in what had become our regular chairs and we exchanged the polite "good morning and thank you for cleaning the room.", pleasantries when she decided that this was the perfect time to give us her opinion on our parenting. Or rather, on Charlie's and in a subtle, passive aggressive way, mine.</div>
<div>
<br /></div>
<div>
And I quote:</div>
<div>
<br /></div>
<div>
"You (she pointed at Charlie with a wide smile) always right there. I come in, you always there in that chair. She (pointed at me and instantly loses her smile), she come and go, but you always right there. You (points and smiles at him again) good daddy." She even nodded in affirmation to complete the point she was making then she mopped her way into the bathroom as I swung around in total disbelief at what she had just said to look at the "good daddy" and get his reaction. </div>
<div>
<br /></div>
<div>
He went right back to reading whatever he had been reading when she came in.</div>
<div>
<br /></div>
<div>
What the what?! </div>
<div>
<br /></div>
<div>
Me (whisper shrieking at him): "Did you hear what she just said?!" </div>
<div>
<br /></div>
<div>
Him: "Yeah, she said I'm a good daddy."</div>
<div>
<br /></div>
<div>
Me: "Did you understand all of what she just said besides that?!"</div>
<div>
<br /></div>
<div>
Him: "Not really."</div>
<div>
<br /></div>
<div>
Because she had a pretty thick accent, Charlie hadn't picked up on everything she had said. It was only after I had picked my jaw up off of the floor and told him verbatim what she had just said and that basically, I, the clearly not so good mother, come and go at my leisure as he, the "good daddy", sits constant vigil by his sick daughter's bedside, did he fully appreciate it. </div>
<div>
<br /></div>
<div>
And boy oh boy, the man lapped it up like a kitten with cream.</div>
<div>
<br /></div>
<div>
I'm here to tell you, "good daddy" fluffed up and preened like a peacock while enjoying a pretty hearty laugh at my expense.</div>
<div>
<br /></div>
<div>
Meanwhile I was stuttering and stammering and still whisper shrieking at him, "How DARE she come in here and imply that I am hardly here and that I just come and go whenever the mood strikes as if I don't have a care in the world when I'm here every bit as much as you and we split our time here at night?! Plus you were gone for FIVE HOURS during the day yesterday! Where the hell was she then?! Maybe I should just tell your new girlfriend that! What nerve!" </div>
<div>
<br /></div>
<div>
Charlie just looked at me and let me go on for a few minutes before chiming back in with this little gem:</div>
<div>
<br /></div>
<div>
"What can I say? You come and go. I'm always here. I'm a good daddy." </div>
<div>
<br /></div>
<div>
And trust me when I tell you, he is going to make damn sure I am reminded of that on a regular basis. And if he should somehow forget, I know a cleaning lady at Maine Medical who will apparently be only to happy to tell me so herself. </div>
<div>
<br /></div>
<div>
<br /></div>
smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0tag:blogger.com,1999:blog-9107348500321352911.post-55557036160150989112016-12-30T19:56:00.004-05:002016-12-30T20:19:55.169-05:00Toodle Bug Update...For those that read my blog and are not my FB friends, I'll give a quick recap:<br />
<br />
Around the beginning of December Tess came down with a respiratory infection. We treated her at home with antibiotics and she appeared to be getting better. Then, about eight to ten days into that particular course of antibiotics, she started to become symptomatic again so we switched her to a different antibiotic and once again, she seemed to be getting much better. After that ten day course of antibiotics, she seemed good until about three days after they were finished. She woke up this past Monday morning with all of her symptoms only they were worse, and by Tuesday was running a fever. I called out the on call island doc who came to the house and agreed she needed a shot of antibiotic. He said he would be back the next day to listen to her lungs again and decide where to go from there. After a couple of pretty rough nights with lots of suctioning and the need to put her on oxygen support, the island doc came back, listened to her and said he really felt like she needed to go to the hospital and at the very least, get blood work done and a chest xray. Me being me and really hoping to buy some extra time to pack, actually asked if he thought we had time to wait for a later ferry rather than the next one that was due to leave. Long story short, I got packing and we got on that next ferry.<br />
<br />
We went thru the ER at the local hospital that her pediatrician works out of on the mainland and they did the blood work and got her right in for the chest xray.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6ZNx_NVlPJZP07uw218NTOVRo4RvkHUHMQMtYwBCYvXdfxC_ewbGVLicyWES62Cm_lY6uDuJud-qgGnzDSW_lNIVG27kw4NA_U4ag-TVfdbW2jk1BjCBdRilm2I0xlFZo7Jx5nw_khkp/s1600/IMG_0618.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6ZNx_NVlPJZP07uw218NTOVRo4RvkHUHMQMtYwBCYvXdfxC_ewbGVLicyWES62Cm_lY6uDuJud-qgGnzDSW_lNIVG27kw4NA_U4ag-TVfdbW2jk1BjCBdRilm2I0xlFZo7Jx5nw_khkp/s320/IMG_0618.JPG" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
It wasn't ten minutes later that the ER doc came back into Tess's room and told us her xray was not good and that her whole left lung appeared full of pneumonia. He then said he wanted her transferred to a bigger hospital, especially since there was a storm coming the next day. So they loaded Tess up in the ambulance and I managed to talk the hubby into riding in it with her (because I absolutely hate riding in the back of those things) and they were off with me following behind in our van.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokvIlfts32Hlop7hXjpRRKMbBWIxrVY6cQhE_raTZ4Gw2-Ou2WcgRX1bacXPpzFzqTT1n6AJvYiIFytOy9OJDAJ28UExYX7hnAfvPIg3Bklg4rj0ubhh7nnKQiJ9EYgiHcX_8hQtonNTd/s1600/IMG_0625.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokvIlfts32Hlop7hXjpRRKMbBWIxrVY6cQhE_raTZ4Gw2-Ou2WcgRX1bacXPpzFzqTT1n6AJvYiIFytOy9OJDAJ28UExYX7hnAfvPIg3Bklg4rj0ubhh7nnKQiJ9EYgiHcX_8hQtonNTd/s320/IMG_0625.JPG" width="240" /></a></div>
<br />
<br />
Tess was brought into the ER at Maine Medical Center and it was confirmed that she had a nasty pneumonia and would need to be admitted. They were also worried about a plural effusion because there was just no breath sounds in that left side. Luckily, that was negative so Tess was moved to the regular children's floor in the Barbara Bush Wing rather than the PICU.<br />
<br />
Per usual, Tess has done what Tess does best. Which is to say she takes three steps forward then two steps back. She will seem like she is rallying, then all of a sudden it's like the pneumonia is starting to gain a little bit of ground, then she fights back and seems a teensy bit better again.<br />
<br />
Needless to say, my nerves are shot.<br />
<br />
But, as I type right this minute, she seems a little better and her doctor is hopeful that by Monday she will have really gotten ahead of this and may even be able to be released. Of course, because it's Tess, he also has a plan B. If she isn't markedly better by then, he is going to perform a procedure on her called a bronchoscopy and literally go into her lung and pull that gunk out himself as well as take a small camera to look at the lung to be sure there's nothing else going on in there that would be making it harder for her to heal up from this. He will also get a sample of the mucus to send off and see what particular bugs might be growing in it (again, only if she isn't better by Monday).<br />
<br />
This morning I was able to take the oxygen off of Tess for a little bit and when I asked her if she was feeling a little bit better, she stuck her tongue out (which is one of the ways she "says" yes).<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRPMh4JOR27aZz5ywhmMazdZM0FjtSaQzLVq52G5827C5tdU825wZqtbQ1hKWCoR8fR6UXd3cz-Oww-r1dXRYBz5JRbN6ekYPz9KCRASu5oBj8ELD7hXBx2YsPJ77LzF1JL7dVK9nPpSZX/s1600/IMG_0629.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRPMh4JOR27aZz5ywhmMazdZM0FjtSaQzLVq52G5827C5tdU825wZqtbQ1hKWCoR8fR6UXd3cz-Oww-r1dXRYBz5JRbN6ekYPz9KCRASu5oBj8ELD7hXBx2YsPJ77LzF1JL7dVK9nPpSZX/s320/IMG_0629.JPG" width="240" /></a></div>
<br />
<br />
Then she proceeded to destat, requiring oxygen again, and then have a nice big seizure during her breathing treatments.<br />
<br />
See? Three steps forward. Two steps back.<br />
<br />
But it's the forward that I'm holding on to.<br />
<br />
And now I will leave you with a few little extra insights into our hospital stay:<br />
<br />
Yesterday, about 2:00 pm.<br />
Me to the nurse after looking at how high Tess's heart rate and respirations were: Are you giving her Tylenol or Motrin preventatively for her fever?<br />
Nurse: No, but we can.<br />
Me: Well, I think we need to take her temperature now. She's very hot and her heart rate and respirations are really high.<br />
Nurse: Sure. (She then proceeds to take it under Tess's armpit which is COMPLETELY INEFFECTUAL and I've told them this repeatedly)<br />
Nurse: 99.4 No fever.<br />
Me: That's not accurate. I know she has a fever. You need to do a rectal temp.<br />
Nurse: Well, we'll just give her the Tylenol.<br />
Me thru gritted teeth and fake smile while really wanting to shred this nurse into little pieces because with a sick child, we NEED to know how high the fever is and not just treat it without knowing: Sure.<br />
The nurse leaves to go get the Tylenol and I rush to my bag and grab Tess's rectal thermometer, pop it into her little bum and get the reading.<br />
The nurse walks back into the room.<br />
Me: It's 101.7 NOT 99.4 I took her temp.<br />
Nurse didn't even bat an eye at the total screw up of trying to tell me that Tess didn't have a fever only minutes before. ARGH!<br />
<br />
Last night: Respiratory therapist for the nightshift comes in to do breathing treatments. I swear to God, she looked like she had just stepped right out of an 80's music video. Seriously guys, bangs for DAYS totally teased and hair sprayed into awe-inspiring heights complete with heavy purple eye shadow and a take no shit attitude.<br />
<br />
I loved her.<br />
<br />
And then Tess's nurse today was one who took such good care of her a couple of years ago when we were here with another nasty pneumonia. She's an older lady;full of piss and vinegar and always laughing. I was so happy to see her come in today and she remembered us as well and was all excited to have "her island family" to take care of. She's a gem.<br />
<br />
So as usual, the hospital stay is full of highs and lows and Tess is being her little warrior self. Honestly, the stuff that this kid has to have done to her would break an adult but she just takes it and keeps on going. She even got giggling at one of the CNA's who came in to help change her bed and started singing Let It Go to her.<br />
<br />
Man, that kid is something.smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com1tag:blogger.com,1999:blog-9107348500321352911.post-76106888580651511502016-12-17T17:32:00.005-05:002016-12-17T17:40:52.113-05:00A contrary case...So I figured I'd give a little update as far as the Toodle Bug, her seizures, and the cannabis trial is going.<br />
<br />
It's not.<br />
<br />
There! All caught up!<br />
<br />
Okay, okay, there may be a <i>little </i>more to the story than that.<br />
<br />
Back near the end of September, you may recall we started a <a href="http://travelswithtessie-toodles.blogspot.com/2016/08/some-of-you-my-fb-peeps-may-remember-me.html" target="_blank">trial of cannabis </a>to help get control of Tess's seizures. We started her out on a teeny tiny dose three times per day plus a rescue med to use immediately when a seizure hit (she was still on all of her regular daily seizure meds and rescue meds as well).<br />
<br />
At the beginning we thought maybe it was working. Huzzah! Tess's seizures weren't lasting as long and it seemed like there was a longer period of time between the big ones. Instead of every four to seven days, it was every eight to ten and once, almost two weeks.<br />
<br />
Needless to say, we were cautiously optimistic.<br />
<br />
Then she started to go backwards and the seizures were lasting for a longer time and the rescue med seemed to not help at all. After discussing with the doc in charge of the cannabis treatment, we were told to increase the dose of the daily cannabis by 100% every two weeks until we saw a change. By 50% every two weeks if we saw some change but not a lot.<br />
<br />
Welp, we saw a change; just not the one we were hoping for.<br />
<br />
For those who aren't super familiar with Tess, she is a constant study in contraries. For example, Tess used to be treated with Ativan as a rescue med for her seizures but her reaction was the opposite of what most people's are when they take ativan. Instead of calming her down, it would jack her up. Another example would be that most people who have a seizure disorder have a spike in seizure activity when they are sick. Not Miss Contrary. Her seizures disappear when she is sick (something we are super thankful for since she struggles so much when she is ill without throwing seizures into the mix). Another contrary Tessie trait is that she isn't bothered by her enteral (gtube) feeding when she is sick or even has the flu. You know, like most people would be. I can't even use it as a guide to how crappy she is feeling because she just does fine with it when most of us can barely stomach a popsicle.<br />
<br />
See what I mean? A case of contraries.<br />
<br />
But I digress. Back to the cannabis trial.<br />
<br />
We had been warned by her Epileptologist in Boston (who is not in charge of the cannabis but of everything else seizure related) that some kids react badly to cannabis. It can actually increase their seizures and she was adamant that we needed to be on the lookout for that because it could cause Tess to go into<a href="http://www.epilepsy.com/learn/impact/seizure-emergencies/status-epilepticus" target="_blank"> Status Epilepticus</a> , which is very dangerous.<br />
<br />
Guess what Miss Contrary did once we started to increase the dosage? Yup, you guessed it. Her seizures got WORSE. They were more frequent, lasting longer, and were more violent. Plus, I had started feeling bad about giving her the cannabis about a month prior but was determined to keep trying so I just pushed that feeling aside. I can't really explain why except to say that desperation is a tricky master. But I know that whenever I get that feeling, I need to trust it. My instinct with Tess is pretty finely tuned in at this point and I just knew I was giving her something that not only wasn't helping, it was actually hurting her. A bad combination. The doc in charge of the cannabis trial wanted me to try going up again on the dose but I finally outright refused and said I was pulling her off until we could get to the mainland to buy a different strain to try. They agreed since I was so adamant about it (plus her Boston doc had been supportive of this trial on one condition; that we would be honest with ourselves if we saw signs that Tess wasn't reacting well to it and pull her off of it). We made a plan with the cannabis doc to try a different strain of cannabis as well as the rescue one, but for now she's not on any since we haven't had the time to go to the place on the mainland to buy it.<br />
<br />
So that's where we are still at and, interestingly enough, she hasn't had a bad seizure since we pulled her off of it. Of course, she also has been fighting a respiratory illness for a couple of weeks so that <i>could</i> explain the lack of seizure activity but still...too much of a coincidence for us to ignore. Plus she just seems more "with it" since we've taken her off the cannabis (even though the strain she was on wasn't supposed to have any mind altering affects, it would seem that it did).<br />
<br />
Miss Contrary.<br />
<br />
As her pediatrician likes to say, "My girlfriend plays by her own rules and makes them up as she goes along and just when you think you've figured them out, she changes them and you're back to trying to figure them all out again."<br />
<br />
Preach, Doc S. Preach.smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com2tag:blogger.com,1999:blog-9107348500321352911.post-76913794523083824152016-11-12T14:18:00.002-05:002016-11-12T14:22:30.402-05:00Yin and YangWhen you have two kids who are neurotypical and one who is not only NOT neurotypical but also medically fragile, you live in an odd space in the universe.<br />
<br />
That space of lecturing one child (back in the days of high school) that her 91 "had better get pulled up to at least a 94 or there will be consequences.", to laughing off a ridiculous <a href="http://travelswithtessie-toodles.blogspot.com/2013/09/testing127.html" target="_blank">warning letter</a> from the State of Maine that your special needs kid is not even meeting the special needs requirements for improvement.<br />
<br />
You yell and scream at sporting events for your neurotypical kids to, "Run faster! Get the ball! Don't you dare give up or let the other team push you around!", and then go to a Special Olympics event and make your kid who is pushing her special needs sister in the 15yd dash <a href="http://travelswithtessie-toodles.blogspot.com/2012/05/olympic-scandal.html" target="_blank">take a dive</a> so another kid can get to also have a blue ribbon.<br />
<br />
It's a world where you leave your kid in the hospital with her dad as she is fighting pneumonia and rush to get to an Awards Luncheon with your eldest kid who has won a pretty sweet scholarship and you just REALLY want to be there with them to celebrate that.<br />
<br />
It's then going back to your island home only for the night (while fervently praying that the child in the hospital does not get worse in your absence) because it's your middle daughter's Junior Prom and you want to be there for the getting ready, the pictures, and because an adult SHOULD be home on prom night just on principle. Also, to make sure they know that they, and the things going on in their lives, are equally as important as the very opposite things that their sister is going thru.<br />
<br />
Where the <a href="http://travelswithtessie-toodles.blogspot.com/2013/03/you-cant-stop-easter-bunny.html" target="_blank">Easter </a>Bunny visits the hospital and your two older kids have to remind you that it's okay if Christmas is also in the hospital because their sister is sick again and the doctors are saying you probably won't get home.<br />
<br />
<br />
It's having your kids graduate high school as Salutatorian and <a href="https://www.youtube.com/watch?v=8tpMoPqYf2o" target="_blank">Valedictorian </a>respectively while knowing your special needs child's school experience will not even be close to their sisters.<br />
<br />
It's dropping off your medically fragile, special needs child at a beloved friend/former home nurse's house in order to be able to attend Awards Night at your eldest child's college because her faculty advisor had personally contacted you so you would be sure to see your child be awarded the Department's Education Award.<br />
<br />
It's watching with amazement and so much pride you feel like your heart might just explode from it, your kid, who has never been able to talk, tell you for the first time at thirteen years old, "I love you.", using an eye gaze device and then hearing her sass people with it with INTENTION. It's validation of all the things you knew your kid was capable of only now, no one can deny it or try to make it seem as though you're only seeing what you're wanting to see.<br />
<br />
It's a constant push/pull of awesome and sucky. Easy and hard. Joy and Sadness. It's both/and. Every single day. <br />
<br />
This morning Tess had a seizure that last just under thirteen minutes. She had only been awake and out of bed for about a half an hour before it hit her. After giving her three rescue meds and waiting for them to do their job, we put her back into bed knowing that she would most likely sleep the rest of the day.<br />
<br />
It was only nine o'clock in the morning by that point but we were already just exhausted from the mental toll it takes on you to watch your child go thru that. Then there is the fear that rings in your head with every alarm from her 02 monitor, "SUDEP! SUDEP!", so you get to keep that nice level of stress going even after the initial seizure has passed. And because the amount of meds that we had to pump into her body depresses her already shallow breathing, she has alarmed A LOT. I finally caved and put on her much hated CPAP mask to try to help her get a restful sleep. It makes me want to cry when I make her wear it because she hates it so much but I fight back the tears, tell her how brave she is and how strong she is and how much I love her and walk away feeling like the biggest shit head around.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLztJQeBu_5NNoYfcaFiQLtn2M5C452K0z6gTwDUiV0p-ctBSJIWanEMqjGDarDwlaEABhV499f51_AQNXU9UvDDkduX3r0jUfU3Ml1xPT0Mn2rxPIsUClLRD1bY6pIX5q67_JgId8aYVK/s1600/IMG_0197.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLztJQeBu_5NNoYfcaFiQLtn2M5C452K0z6gTwDUiV0p-ctBSJIWanEMqjGDarDwlaEABhV499f51_AQNXU9UvDDkduX3r0jUfU3Ml1xPT0Mn2rxPIsUClLRD1bY6pIX5q67_JgId8aYVK/s320/IMG_0197.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the hated CPAP </td></tr>
</tbody></table>
<br />
<br />
Then I walked out to the mailbox and found this:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZuqKO9G2HNdMWO6nrNHIQ6ODkb36obmsc4gfPqHMLhDpHa4ephzBQoPE_lVoFTBS0b6kgN1MnM2KDjpzubN-Q0OY6s5qfU7bNDCYuxND7DixXCC5vMwRGw-cxsFzzSpVmWRY2PZI4x70J/s1600/IMG_0196.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZuqKO9G2HNdMWO6nrNHIQ6ODkb36obmsc4gfPqHMLhDpHa4ephzBQoPE_lVoFTBS0b6kgN1MnM2KDjpzubN-Q0OY6s5qfU7bNDCYuxND7DixXCC5vMwRGw-cxsFzzSpVmWRY2PZI4x70J/s320/IMG_0196.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">proud proud proud</td></tr>
</tbody></table>
<br />
<br />
Ellie was invited to join Omicron Delta Kappa National Honor and Leadership Society based on her "superior academic achievements" and "exceptional leadership ability." All this while taking pre med classes.<br />
<br />
My mood instantly went from scared and sad for one kid to completely happy and proud for the other.<br />
<br />
This is the Yin and Yang of my life.<br />
<br />
It's bizarre and scary and awesome and, as the saying goes, "gives me all the feels."<br />
<br />
In other words,<br />
<br />
It's good.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5X_2rUtJNrco3MMfptmRThkCgC37vWRVCJhBcYfPzdNjEy6FT3xy8MGoRHClfOyh45XmrXarHE0h8j28s0VJB2DU8g3DLlA87OTGrAayRoYtGB57hlPM7RgcNENu8KTLrGj73pRDZkh0/s1600/35123-yin-yang-good-and-bad-in-life-quotes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5X_2rUtJNrco3MMfptmRThkCgC37vWRVCJhBcYfPzdNjEy6FT3xy8MGoRHClfOyh45XmrXarHE0h8j28s0VJB2DU8g3DLlA87OTGrAayRoYtGB57hlPM7RgcNENu8KTLrGj73pRDZkh0/s320/35123-yin-yang-good-and-bad-in-life-quotes.jpg" width="320" /></a></div>
<br />
<br />smilinjohttp://www.blogger.com/profile/16774270348325860387noreply@blogger.com0