Friday, November 17, 2017

Writing a new chapter...




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.


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.

Now for the backstory on how we got here.

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.

 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. 

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.

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.

Enter the Morrison Center. The school that Tess is currently attending.

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.

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.

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.

 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.

 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. 

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.

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?

Let the new chapter of our lives begin.  :)






Monday, August 21, 2017

Charlie 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!

Huzzah!

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.

Here we go.

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*

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.

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.

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.

left you say?

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.

Traditional Irish Dancing

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.

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.

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.

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.

Cliffs of Moher

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.

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.

Seriously, look at this. Does anything about this seem safe to you?

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.

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

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.

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.


All the no's to this ferry ride


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.

Charlie kissing the Blarney Stone

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.

She smiled at her father right away. Punk.

And so ends the very long tale of Charlie and Joanna's Excellent Irish Adventure.



sláinte!




Saturday, July 29, 2017

Traveling 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.

They gave us a trip to Ireland!

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.

not the most flattering pic but the one of us after just opening our present


TOGETHER. ALONE.

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.

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.

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."

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.

You want to talk about feeling blessed? How blessed are we?!

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.

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*

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.

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.

Because Ireland.

And because Charlie and I never had a honeymoon so there's that.

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.

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.




Meanwhile, Ireland, vacation, a break from real life....fears or not, it all sounds pretty dang good to me!

Thursday, June 8, 2017

Sweet 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.

I explained why I was good with it in my last blog post 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?

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.

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.

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.

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.

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.

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.

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.

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).  :)

Sunday, April 16, 2017

God 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."

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.

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, Are you there God, it's me, Joanna?. (click here to read that post).

Basically I wrote about God showing up.

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.

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.

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.

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.

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."

Then she told us and my very first thought was "God is good."

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 THAT 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."

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.

What's changed?

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 GIFT 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.

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.

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.

Tess has Rett Syndrome. (click on it to learn more if you're so inclined)

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 NORMAL daily lives now and have been for years.

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
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.

In other words:

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."

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.

I say again, God is good.

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.

Happy Easter, everyone!




















Sunday, March 26, 2017

Just another day...

I have a confession to make.

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.

I literally did none of those things. Not one.

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.

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*

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.

Maybe not.

And let me also defend my sour puss attitude by saying that it seems like every day is an "Awareness Day" for Tess somehow.

For example:

Today is Epilepsy Awareness Day.
Yesterday was National Cerebral Palsy Awareness Day.
There is a Feeding Tube Awareness Week.
There is Rare Disease Day.
There is Undiagnosed Day.
There is Scoliosis Awareness Month.

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.)

To all this I'm saying, Enough. I've had enough. How can anyone possibly keep up?

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.

I'm willing to bet if we do get an "official" diagnosis I will be all over whatever "Awareness Day" is associated with it.

But for now I'm going to stick with the only "Awareness Day" that totally covers all of the "Awareness Days" mentioned above.

Her Birthday.

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.

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.







Friday, February 24, 2017

The 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.".

Personally, I thought he was being a bit overdramatic considering how minor the surgery was.

Once again I was right, and I was wrong.

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.

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 really 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.

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.

Still, she looked, "off".  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 concrete 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."

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.

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.

This is a bigger deal with Tess than with most kids for two reasons:

1: Tess had something called a Nissen Fundoplication 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

2:Tess only gets nutrition thru her gtube . 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.

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.

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.

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.

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.

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.

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.

We were scared to death for her. And the guilt for me was so bad because I *knew* 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.

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).

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.

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.

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.

She's still not herself, but she is slowly getting better.

As for me, my guard is way up and I won't be ignoring my instincts where the Toodle Bug is concerned again.

And I won't ignore Oreo's either.