Sunday, December 19, 2010


Last night was the annual Parade of Lights and Community night in our town. Thanks to a newly formed committee, WeGAS, the town was decked out and alive with Christmas spirit. It seemed so nice after last year's dismal display which is what prompted the committee to form.

Earlier in the afternoon we had taken The Toots to see Santa at the Fire Station. She thought he was pretty good and naturally we captured the moment on film, well, technically a memory disk, for posterity.

I was freaking out that Santa, who was definitely getting along in years and looked a tad peaked, might drop her. The fire chief, Marc, teased me quite a bit about it but I noticed he had given the word to the other people helping out to make sure Tessie was safe. And the icing on the cake was that The Bean showed up and, under the guise of having a photo taken with Tessie and Santa, was at the ready to catch Tessie should a mishap occur. Of course, everything was fine and Santa had a firm grip so all's well that ends well there.

Anyway, back to the parade. Dad came and helped get The Toots into the van and Ann had already scoped out and saved a prime spot for us to park downtown. She pulled out and I went to pull in and nearly took out the truck parked next to us. Dad was just a bit nervous and was totally over-reacting and back seat driving while I reversed, nearly hit the car behind me, shouted to Dad that everything was under control, swung back in and did the same thing. Again. Dad was shaking his head and muttering while I hopped out and said, "You do it!". My brother, who happened to be standing nearby watching this all with what appeared to me to be a little bit of disgust at my driving skills, hopped in and in a single motion parked the stupid van. Easy Peasy. Whatever.

And just so you know, I am a great driver. Never had an accident or even a parking ticket. Just sayin'.

So we get all settled and wait for the parade to begin. Dad and Ann went across the street into the stores to socialize. The Toots and I stayed in the van. It was too much hassle and too cold to take her out so there we sat. And I might as well be honest here. It sucked. It was so depressing sitting alone with Tessie and watching all the 'normal' families and their kids excitedly running around. I wish I could just get over it but things like that still sucker punch me. The whole "what-should-have-beens" kick in and the feeling sorry for myself covers me like Harry Potter's invisibility cloak. It is almost an ache that you can't quite pinpoint. Except you can. It is heartache.

Then my mom hopped in and distracted me from my doldrums. A very good thing. Then Ann showed up with a cookie for me. A very great thing. And then the parade started.

It was cute and fun and Tessie, who was up front and sitting on my lap really seemed to be enjoying it which really helped my ache ease up a bit. Then the GLEE Club float came by.

It was awesome. Of course, having Blake be a member might make me a teensy bit prejudiced, but I thought they were great. They stopped in front of the judges and sang and danced for everyone. They were laughing and singing and dancing and it just made you feel warm all over to see such a good group of kids having so much good, clean fun.

But they were facing away from us. Oh well, I was still grinning ear to ear and felt so much better after seeing them. The rest of the parade went by and came back through again for the final time.

This time the GLEE kids stopped directly in front of my van and performed all over again. Facing us. They were singing and dancing to Mariah Carey's "All I Want for Christmas is You" and when they sang that part they changed the "you" to "Tessie". Can we all say "AWWWWWWW??" They did this just for Tessie. I was so happy and proud of these kids. They totally embodied what the Christmas Spirit is all about...putting yourself out there to make someone else happy. And boy did they.

And to top it off, after they sang they ALL ran over to the van's window where Tessie was to say "Hi" to her and a very special "I love you Tessie" from awesome big sister, Blake.

I know Tessie felt the love from them all. I could literally feel her shaking in my arms which is what she does when she is super excited. Then, after they were gone, she gave a big chuckle.

And I forgot about feeling sorry for myself and for Tessie. I forgot that we weren't 'normal'. I forgot that Tessie wasn't out running around like all the other kids.

Thanks to Jessie and her young proteges, Tessie and I were both totally GLEEful...

Merry Christmas!!

Tuesday, November 30, 2010

Dear Santa...

Dear Santa,

I have a few things that I would like you to bring me for Christmas this year. I think that I have been a pretty good girl so you should definitely find my name in your list under NICE.

Okay, okay, so maybe I got mad at my kids for no good reason a few times and maybe, just maybe my hubby got the brunt of my stress and frustration every now and again. And yes, I love to tease people and I do whine some and feel sorry for myself every now and again. And that little road rage issue, well, what can I say, some people just really need to be flipped the bird every now and again. Still, I think overall I have been good so here are my Christmas wishes...

Please find a cure to seizures and give it Dr. Ann Bergin at 9 Fegan, Childrens Hospital Boston. If that is impossible, then please bring Tessie a seizure service dog to alert us when she is about to have one so I can shower or make dinner when I am home alone with her.

Please help my hubby get our new (now ten year old) house finished. He has worked so hard and been thrown quite a few, very unfair, curve balls so a little help in that arena would be very much appreciated.

Please leave, in my dooryard, a handicapped accessible van. Tessie is getting so big to lug in and out of a car seat and it makes it dangerous for her and the carrier. Insurance insists that this is not covered under their 'durable medical equipment' policy even though it is MEDICALLY NECESSARY.

Please make our home handicapped accessible as well. Your elves should be able to pull that off without too much trouble. Aren't they quite handy with tools? Insurance refuses to pay for "luxeries" such as this. Once again, even though it is most definitely MEDICALLY NECESSARY.

Please bring Tess a new wheelchair because she no longer fits properly in hers and insurance doesn't seem to agree that children will grow in a four year period.

Please bring me EVERYTHING in the Pottery Barn catalog and if it wouldn't be too much trouble, bring Nate Burkis to decorate.

Please bring me John Travolta (you know why) ;)

And most of all Santa, please help me keep the Christmas Spirit even when everything seems overwhelming and impossible. Help me keep my sense of humor and love of everything Christmas.

Hhmmm...I just reread my wishes and on second thought, Santa, you can scratch me off your list this year after all (except for that last part). I just realized I already have everything I really need.

I have my faith, my family, and my friends. And if we are to believe all the corny cliched Christmas movies, and I do, then that means I have everything.

I still believe in you Santa,

love, ~J

PS maybe keep John Travolta on there. 'kay?...

Sunday, November 28, 2010

I heart NY;The Sequel...

I am going to be turning the big 4-0 in about a week and for this momentous occasion, my dad is paying for me to go to NYC. A bunch of girlfriends will coming as well and I think it will be a blast! But....

I have to leave the Toodle Bug behind.

This is already making me start to get teary when I think about it. And to let you know the seriousness of my despair, I am NOT a crier! I have never left her for more than a couple of nights since she has been born. I am torturing myself with endless questions and what if's.

What if she gets sick before I go? Will I still go? I keep saying that I am going unless she is actually in the hospital but could I really leave her if she were sick? What if she gets sick while I am gone and she wants me to comfort her and snuggle? Should I call and talk to her on the phone or will that only make her miss me more? Will she understand why I am not there? And the biggest and worst question I keep asking myself, will she think I have simply abandoned her? I know that sounds quite dramatic but how am I to know. I will explain to her that I will be back in a few days but will she understand?


Leaving Blake and Ellie was never this hard because they could talk to me and let me know that they understood I would be back. That my going away was only temporary. They could tell me that they missed me. But Tessie can't so how am I to know what she is thinking and, for that matter, do I really want to know because if I did I probably would just stay home.

While I am very excited about going and yes, even getting away from all the daily stresses that my life now has, I will be glad when it is over and I am home. But I am used to having these conflicting emotions. I have learned that they are all part of life with a child with special needs. Joy and sadness, pain and pleasure, pride and yes, even embarrassment (again, not by Tess but by things that she can do at very inappropriate times), all experienced almost simultaneously at times, to the point that you don't think you can take any more.

But you do.

And so I am going to my favorite city in the world. The Big Apple. I will have a great time with great people and be very glad I went.

I will also pay dearly for daring to have the gall to leave The Toots. She will probably refuse to look at me when I first get home and then she will look at me and cry like her heart has been broken. And I will have to deal with the fact that I was the one who broke it. I will have to sit and snuggle for quite a while in order to be forgiven and I will feel like a total selfish jerk because I put her through it.

What she will not tell me is the awesome time that she had with Sheila and Leo while I was gone. How they spoiled her rotten and took her to see the Christmas lights and Santa Claus. How they let her watch her favorite movie over and over again. How she got to sleep with Sheila every night.

No, I will only get the guilt and like the world's biggest sucker I will fall for it.

However, I comfort myself with two undeniable facts:

Tessie knows how much I love her and, I get to go to NYC during the Christmas season which I have always wanted to do.

Anybody got a spray can of Guilt-Be-Gone?...

Sunday, November 14, 2010

Kids say the darndest things...

We go to my hubby's mom's house for Thanksgiving every year. The only year that we missed it was Tessie's first Thanksgiving and I was so sick that I just couldn't conceive of traveling over the holiday.

I have a love/hate feeling towards Thanksgiving. I hate the getting ready, packing for Tessie, dreading the weather, making the desserts and so on. But once we actually get there I am fine (plus we always go to the movies on Thanksgiving afternoon. And Blake and Ellie absolutely love going. It is their tradition and basically all they have ever known. It just wouldn't be Thanksgiving for them if we did not see The Reidys...and oh my God, are there a lot of them!

My hubby is one of ten kids. That's right, I said ten. You can do the math when you figure in spouses, partners, and kids. That's a whole lot of Reidy. And for some of us, it will be one of the very few chances we get to see each other throughout the year. And the cousins (our kids) really enjoy seeing each other and the fact that they don't get much of a chance otherwise makes it that much more special.

They have been known to regale us with jokes, songs and even little skits that they made up while the turkey cooked and the finishing touches were made to the dinner. They will rummage through Grandma's dress up box and appear in full costume, complete with wigs. It can be quite funny.

Because we don't see each other often, it can be quite awkward for the kids to interact with Tessie. They are just not sure how to talk to her and include her.

Last year, I was sitting with Tessie in the TV room with a few of the other kids while we watched a kid movie. I wanted Tessie to feel like she was with the kids and that is what they were doing so I brought her in, and because she can't be left without and adult, I stayed in the room.

As we were sitting there I saw my niece, Katie, kind of sidle up to Tessie. She dragged a little chair over next to the wheelchair and plunked down. She was acting a teensy bit unsure so I pretended that I wasn't watching because I think it makes kids more nervous when they feel like their every move is being observed by an adult. Plus, I wanted to see what she was going to do because it was clear that she had some kind of plan.

The next thing I knew she was sitting right beside Tessie, sort of leaning in to be closer and had taken Tessie's little hand in hers and was very gently rubbing while quietly talking to Tess. It was beyond adorable. And it made me want to cry because she was treating Tess like a friend and not talking to her because an adult told her that she should. But what happened next made me want to bawl like a baby and laugh hysterically all at the same time.

Katie, still holding and rubbing Tessie's hand, looked at me and out of the blue said, "I love Tessie. She is a really good listener and she never interrupts you. And her hands are so warm and soft." Then she went back to watching the movie, still sitting with Tessie and holding her hand. It was one of the sweetest moments I have ever experienced with Tessie because it was so unexpected and innocent.

And with that sweet little observation, Katie reminded me to fully appreciate all that Tessie has to offer and not dwell on the things she can't do. That sometimes the littlest things are the things that we may need most of all...

Someone to listen to us without interrupting and a warm hand to hold...

Saturday, November 6, 2010

Fire in the Hole...

I was home alone with The Toots the other day enjoying a cozy afternoon with Christmas music blasting, a good book and a roaring fire in the woodstove when I heard a strange sound. Sort of like an animal scuffling on the roof. I looked at Tessie and asked her, "What was that?!" She looked back at me as if to say, "Who cares. The real question is, why isn't Spongebob playing on the TV?". We shrugged it off.

I went back to enjoying my book when I heard the noise again. Louder. I looked up at the ceiling then at the woodstove. Nah. It couldn't be a chimney fire. It was probably a squirrel or raccoon that had gotten trapped inside the chimney. Besides, didn't we have enough to deal with? I mean really, doesn't enough scary stuff happen on a regular basis that it would sort of make you think, surely nothing else could happen. Uh huh, sure.

After a few more odd crackling and fireworky type noises, I decided I'd better investigate. I went up to Ellie's room on the third floor and did a visual sweep of the premises (doesn't that sound very professional? I think so). Nothing to report there. So I went back down to the living room, double checked that Tessie was safely tucked into the couch so she wouldn't fall off, and went out on to the deck upstairs and looked up.

Red hot embers were flying out of my chimney and onto the roof. Shit.

I went back inside and contemplated what to do. It certainly didn't seem like anything to panic about but at the same time that little knot in my stomach that always lets me know when things are going downhill with Tessie was starting to talk to me. I paced around for a minute and then went back out onto the deck. Was that a lick of flame? Double shit.

Back inside to pace, this time with phone in hand. To call or not to call, that was the question. It didn't really seem like a big deal but it also did not seem like it should be ignored. Flames should not be shooting out of your chimney, even if infrequently. Right? Right. Okay, one more look-see then.

This time I ran outside to get some perspective from the driveway. And yes, I left Toots in the house while I did this. She was not in any danger as I had made sure that my roof was clearly not on fire and there was no smoke inside my house and besides, what other option was there. I had to know.

At any rate, that sealed the deal since I saw more embers and another couple tongues of flame shoot out.

I raced back inside and called our fire chief, who just happens to be The Bean's dad, and asked him, "Is it normal to see embers and a little flame come out of the chimney?". His immediate response was, "Not usually." I then told him that I thought I might have a small situation brewing and could he come check it out without calling out the whole fire department.

I was hesitant to involve the fire department for fear that my family would get wind that they were at my house and naturally assume Tessie was in bad shape.

"Be right up" he said and told me to shut down the air to the stove. Well what a good idea considering I had the damn thing wide open to fully enjoy the crackly, pretty flames. Wow, I can be so BLONDE sometimes. I blame it on the hair dye.

By the time he arrived it had basically put itself out (not because it took him a while; it didn't, but because it was only just starting and the lack of air snuffed it).

I showed him downstairs (to my ultimate shame because it looked like an advertisement for the show Hoarders)so he could look up into the chimney and he confirmed there had, in fact, been a fire but that it was out. As a precaution, he blew chemicals up into the chimney and told me no fires until Charlie had cleaned it. No problem.

As he was leaving he said to me, "If you here a train coming call 911". I was perplexed and seeing my obvious confusion be added that a chimney fire in full flame will sound like the whoosh whoosh of an oncoming train. Got it.

So for the rest of the afternoon, The Toots and I sat and waited to see if a train was coming. None did.

Like the old joke goes...

When God was handing out brains I thought he said trains and ran to catch one. Toot! Toot!...

Sunday, October 31, 2010

Trick or Treat...

I was trying to decide what to dress The Toots up as for Halloween this year and it got me thinking about her last six Halloweens.

Her first Halloween is seared into my memory as if it were burned in by a branding iron. And for all the wrong reasons.

At the time I had not yet been diagnosed with a thyroid problem or cancer. I only knew that I was in a lot of pain and was so tired all the time. I was trying my best to be a good mommy and had the kid's costumes all ready to go and was even acting as if I couldn't wait to go out trick or treating.

Late that afternoon my sister-in-law stopped by with a friend to visit. As I was sitting, holding Tessie in my arms (she was about four months old) I got the strangest feelings in my body. First my feet got all hot and tingly, then my face and then my heart started to beat really fast. I thought I was going to pass out. But me, being me, I pretended like nothing was wrong and simply had Blake take Tessie and said I had to use the bathroom. I pulled myself together enough to get through the visit (I should get an Oscar for that performance) and after they left I went down to my room and called my mom. She came right over and told me I was having a panic attack.It was horrible. If you are lucky enough to never have had one then, as the saying goes, you are lucky enough.

Anyway, my mom helped the kids get dressed up as I waited for the medication that the doctor had given me to work. We told the kids that I had a bad headache so that they wouldn't be scared that I was laying in bed. Finally, the meds did their job and I felt like I could actually function and take the kids out for trick or treat. It was such an awful night for me but my kids never knew it and that's what counts. The Toots went as a little pumpkin and was adorable.

I learned later that my thyroid being so out of whack was what had caused (and still does to this day on occasion)such a bad panic attack. I also have learned, that once those nasty little attacks get a foothold on your psyche, they do not leave easily. Stress is not a friend to panic attacks either. I used to be embarrassed at what I thought was a weakness but now I know that neither weakness, nor strength, have anything to do with it.

Anyway, by the next Halloween I had had my first surgery (the second surgery came six months later and removed another 15 lymph-nodes) to remove my cancerous thyroid along with fifteen lymph-nodes. And I was feeling quite a bit better mentally thank god.

I decided to dress The Toots up as her favorite little stuffed toy, Ghostie. This was a little stuffed ghost that Ali had given to her the previous Halloween and Tessie loved it. We took it everywhere and anywhere she went. It soothed all of her problems. I thought it was an odd thing to be so attached to because it was literally just a five or six inch stuffed ghost. Then again, I have never professed to understand much of what The Toots deems awesome and why. At any rate, Gram made the costume and again, adorable.

Halloween 2005 saw Tessie as Raggedy Ann. Anyone who knows me knows that I have a pretty good sense of humor that can lean a bit toward the sick side every now and again. The reason I dressed her up as Raggedy Ann was because by this point we were full into the 'special needs' process and had been diagnosed with "Global Developmental Delay with Hypontia". Hypotonia is a fancy word for low muscle tone and was known as the 'Rag doll syndrome' because of how limp these kids bodies were. Hence, dressing her up as the world's most famous rag doll. Sick, I know. But I still chuckle about it. And, yes, she was adorable.

2006 Tessie was a chicken. We are talking feathers and all. My inspiration? Her thin little chicken legs. In a word; adorable.

2007 I dressed Tessie up as a doctor complete with scrubs, cap, lab coat, mask, and stethoscope. Can you guess why? Again, just trying to find the humor anywhere that I could and she was just so damn cute all dressed up like that.

By 2008 it was getting really hard, and if you will excuse the pun, tricky, getting Tessie in and out of the car in a full on costume. She was getting big and lugging her in and out of the car repeatedly took it's toll on my hubby and me. We would start bickering about where we were going to take her. It was very exhausting, plus, she couldn't eat any of the candy and on top of that, anyone who did not know her really well would comment on how "shy" or "tired" she must be because her head would be down and daddy was carrying her. Trying to explain to someone that she was disabled was awkward for everyone to say the least. We decided that this would be the last year we would take her around trick or treating. I dressed her up as an Angel for obvious reasons. She is a little Angel.

Last year I dressed her up as her most favorite character in all the world. No, not Spongebob, his 'frenemy', Plankton. I found a home made costume on Ebay and it was awesome. She thought she was just great in that costume. It was so cute to watch her when we showed her herself in the mirror. And I came up with, what I still think is an ingenious solution to the trick or treating dilemma. I take her to my dad and Ann's in costume to help hand out candy to all the kids that come. And because my stepmom is a teacher, they get quite a few kids for Tessie to see. So she still gets to dress up and go out and see other people, it is just in one place. It works for us and eases my guilt about not taking her door to door.

This year she will be a witch. What can I say? I got lazy.

Happy Halloween!...

Tuesday, October 12, 2010

What will be, will be...

It was supposed to be a fun, family trip to the White Mountains. You know, leaf peeping, Santa's Village, Storyland, Clark's Trading Post. Time spent as a whole family unit, not divided into me and Tessie in one place (like a hospital or doctor's office) and Charlie, Blake and Ellie in another. Just like in previous years, we would be going with Dad and Ann and my brother's family. This is a trip that I have been going on with my dad since I was a little girl. Some of the players have changed through the years but the trip itself is still the same. And I love it.

I should have saw the first warning sign on Friday night when I was packing. I was just getting everything all together while my hubby was getting The Toots ready for bed when I heard the call come through the walls..."Joanna, I think she is having a seizure." Translation, "Joanna, get in here now!".

I ran into The Toot's room and sure enough she was hard into it. My hubby and I did the usual soothing talk, stroking Tessie's arms and legs, getting the oxygen, timing the seizure, and basically waiting it out while trying to remain cool and casual as the minutes ticked by until we would have to give the emergency medicine. At that point we gave the med, gave her oxygen and hoped it would break the seizure. That, for me, is the worst point out of the whole event because what if the medicine doesn't work? The wait is almost painful in it's intensity.

But work it did so we put The Toots to bed and I finished packing. Was there just a little squirmy feeling in my gut that maybe something was brewing? Sure. Did I ignore it? Absolutely.

We got up and made the first ferry which is no small feat when trying to get five people out of the door by six-thirty a.m., one of whom is in need of total assistance.

We got to the mainland and ran a few errands before striking out for the White Mountains. I insisted that I had to get The Toots some Tylenol suppositories (she cannot take any fever relievers other than those because of her special diet) because I had only bought a small package of them and wanted to have more on hand in case she developed a fever unexpectedly. Was she showing any signs that she was getting sick? No. What prompted my insistence that I get those suppositories? Like I told my hubby later, "I'm just that good." Haha...

We finally hit the road and were about thirty minutes into our three and a half hour drive when I turned to my hubby and said, "I don't remember seeing the big, black suitcase. You packed it, right?". Dead silence. Then a very slow and grim shaking of his head. I thought he was messing with me. He wasn't. I was so mad I almost couldn't get the words out to give him hell. But I managed.

After several minutes of listening to us bicker back and forth about who was to blame, Ellie, the voice of reason, piped up from the back seat and basically told us to suck it up and stop arguing because it didn't matter who forgot the stupid suitcase. We had to go back and get it. That's my girl.

We turned around and went back to Rockland while I frantically called my mom and asked her to get it to the next boat which was due to leave in about seven minutes. We figured she would never make it because there just wasn't enough time but she pulled the rabbit out of the hat and got it there with a minute to spare. Anyone who has ever seen my mother drive will understand how she accomplished such a miraculous feat.

Blake insists that forgetting the suitcase was a sign that this trip was not meant to be. She could be on to something.

An hour and a half later we picked up the suitcase and hit the road. Again. Then we got to Fryeburg. It was the weekend of the Fryeburg Fair and the traffic was backed up for miles. It was almost surreal. We waited and waited and waited. Moving about ten feet every five minutes or so. Finally, we got the hell out of there as I cursed every person who ever went to the Fair. Then we got to North Conway. But wait, what's that? More traffic? Nooooooooo.......

It took us just under two hours to travel the eight miles to our hotel. I started talking about buying an Oozie (not sure if that is how you spell that type of gun?) and taking out other people. Ellie and I were laughing quite hard over it but my hubby seemed a bit concerned for my sanity. Or his life. Who knows?

At any rate, while sitting in traffic I noticed that Toodle Bug was doing an awful lot of sneezing and going into uncontrollable coughing jags. I tried so hard to shrug it off. But I knew. I knew, I knew, I knew. After all, this was not my first time at the rodeo as far as The Toots was concerned and I had heard her make those sneezy, coughy noises in the past. Always right before she got really sick.

We finally made it to the hotel around five-thirty which meant that we had been in our car for eleven hours. Blake had jumped in with Dad and Ann earlier that morning to ride with them so they, along with my brother's family, had gotten there hours before us and had even gone to Storyland and had some fun. No biggie. We would have fun the next day and that was what I really wanted to do anyway...Santa's Village and Clark's Trading Post.

After we all had dinner together in my brother's room, I took Tessie to our room for bed. By this point I could no longer ignore the fact that she was getting sick but I was just hoping she wouldn't get much worse. Dare to dream, I guess.

Around four-thirty in the morning I was awakened by some kind of animal barking. No, wait a second, that was Tessie making those god awful noises. I jumped up and told my hubby to get up and poor Tessie was struggling to breathe. We grabbed the oxygen and gave her that for a minute and then we ran the shower on hot to try to get the steam to help her break up her cough because it was so bad. We were debating about going to the ER when I bit the bullet and called nurse Sheila.

I frantically told her what was going on and asked her for some advice. Thank God for Sheila. She eased my quickly growing panic and told us what to do. We got Tessie settled back down and all went back to bed still foolishly hoping that by morning she would rally enough for us to be able to finish our trip.

102.5 degree fever at seven meant our trip was over. The Toots was so sick she could barely keep her eyes open and I did not want to be alone to take care of her in a hotel room in a city where I did not know where to go for help. Sheila to the rescue once again. She told us to bring Tessie to her and she would take care of her.

We told Blake and Ellie that we had to leave and that was the worst part for me. Most people do not understand how very little we really get to do with them anymore. Partly because they are growing up and are doing their own thing but mostly because Tess requires so very much of our time and attention. And it is something that my hubby and I frequently ask ourselves, "Do Blake and Ellie resent the time that Tessie takes up?" They love their sister dearly but it must get old for them. It must get frustrating. But they never complain about it other than to ask when I have been away for more than a night or two with Tessie, "When are you coming home?".

As usual, they took it like the troopers that they are and smiled and kissed and hugged us goodbye as they went off for a day of family fun without their family (well, sister and parents).

I smiled and joked with them as they left and told them to have fun and then sobbed all the way back through North Conway. My hubby, obviously thinking that I was worried about Tessie, reached over and patted my leg and said, "She'll be okay." I looked at him like he had just dropped in from Mars and said, selfish to the core, "I'm not crying about Tessie (of course I was, in part). I am crying because I wanted to go to Santa's Village and Clark's and because I never get to do anything with Blake and Ellie!"

I sobbed and carried on for a while about the unfairness of it all and then decided to put on my big girl panties and just deal with it. This is my life now and fighting what is happening and feeling sorry for myself only makes it that much harder on me and everyone around me. I also thought about the saying that tells how we can't change what happens to us but we can change our attitude toward what happens.

And like my NanaBelle used to say, "What will be, will be"...

Sunday, October 3, 2010

Gee, a tube...

Tess has been fed through a tube that goes directly into her belly since she was four years old. Up until that point she was given formula in a bottle as a baby and then as a toddler we put her formula into a cup and fed her baby food. She never was able to handle anything more than the number two baby foods and yogurt or she would choke. And bonus, she regurgitated everything she ate up into her nostrils and it would literally flow out of them as she was eating. Sort of like the old soda out of the nose trick only this was definitely not funny.

She was also having aspiration pneumonia because she was swallowing pretty much anything she ate into her lungs. It was a living nightmare but we kept doing it because we did not know any better. I think back on that time now and shudder. We could have so easily lost her to those pneumonia's. I've said it before and I'll say it again, ain't just a river in Egypt.

But luckily for her, and us, Tessie has many angels in her life that watch over her...both figuratively and literally.

One of those angels is Kellie. She was Tessie's speech therapist from the age of about one and a half to five. Through meeting with her once a week every week during those four years, Kellie and I became very close. She let me cross the professional boundary lines with her and now she is one of my dearest friends. I don't know what it was with Kellie but I felt a connection to her right off the bat that went beyond the 'therapist' title and she felt the same way about me. When our girls, Ellie and Hannah, became bosom buddies, that sealed the deal. Call it fate or destiny or whatever you want but Kellie was one of those people that was meant to come into my life. It was no accident that she became Tessie's speech therapist and I am thankful for that every single day.

Anyway, my point is, Kellie and her family came out to the island to visit us a few months before Tessie got her Gtube surgery and she freaked out when she saw Tessie eat. In her words, "I felt sick. I couldn't believe that nobody had told you after seeing her eat, that she needed as Gtube ASAP. I knew in my gut that if you didn't get that kid feeding through a tube soon she would die from pneumonia." Of course Kellie didn't come out and say that then. She only told me this later. After Tessie had the surgery. At any rate, unbeknownst to me, Kellie went home and called Tessie's pediatrician and talked to him about it. Poor Kellie, she really went to bat for us but got nowhere with Tessie's pediatrician and I honestly believe it was because he didn't want to believe it himself. We had gotten quite close to him through all of the many trials and tribulations of Tessie's health and I think he had a little denial going on himself as to how bad things were getting with The Toots, or "My girlfriend" as he calls her. At any rate, Kellie very gently began to talk to me about the idea of a gtube. Just little hints here and there so that I would not be completely blown away when it finally did happen because she knew that I was in a lot of denial about it.

The gtube train rolled out of the station when Tessie had a surgery date set to have ear tube replaced and her adnoids removed in the hopes that the 'food out the nose trick' would stop. When we got to Maine Medical Center Tessie was recovering from yet another aspiration pneumonia and the ENT doc was pissed because they weren't sure if they dared give her anesthesia while her breathing was already compromised by the pneumonia. He simply could not believe that she didn't already have a gtube. In the end, after taking all the precautions they could, they went ahead with the ear tube/adnoid surgery. Then the doctor made a special visit into Tessie's room to talk to us.

He sat on the edge of her bed and proceeded to bombard us with appointments that he had set up for her to go ahead and get a gtube. He had scheduled a visit from pediatric pulmonology, pediatric surgery, and pediatric GI. They would all coordinate
and make a surgery date for Tess and he had put it under an emergency basis so that it would happen pretty quickly. Then he left and I jumped up and told Charlie that I had to get out of there for a minute. I grabbed the cell phone and went to the family lounge and called Auntie and bawled my eyed out while telling her that I would no longer be able to feed Tessie by mouth.

I was heartbroken. Tessie's cure-all for anything that was wrong was her sippy cup. How could I take that away from her? It was cruel to do that to her and I would be the one doing it! She had so much that she could not do and this was yet another thing that would now be added to the list. Besides, I loved snuggling with her while she drank her formula. I guess I was mourning for what I would lose as well.

But here is where doing what is best for your child verses what is best for you came into play and I knew in my heart that the doctors were right. So we visited with all the docs and the surgery date was set for three weeks later. The GI doctor asked me if I wanted her kept in the hospital unit the surgery? I asked why would I? He replied, "I am required by law to tell you that by taking her home you are risking her life. She may get another aspiration pneumonia and die. If she were kept in the hospital, we would insert a nasal gtube into her and feed her through that until the surgery." I was at a loss. How do you respond to that? So I posed the question that I always ask doctors now when deciding life and death issues, "If she were your daughter, what would you do?". That always makes them stop and think. And I really respect that doctor's honesty that day when he said, "Take her home. I feel like you are doing a really good job keeping her relatively healthy and she is more likely to catch something in this hospital that would make her sick while waiting for the surgery."

We took her home.

After three more consult appointments over the next two weeks it was decided that she should also get a procedure done while she was already under anesthesia called a Nissen Fundoplication. This would stop her from refluxing food from her belly up her throat and eliminate the chance of her swallowing that back into her lungs. It also would mean that she would no longer be able to vomit and would retch instead when she got air trapped in her belly from gas. I was very hesitant but agreed.

We brought her to MaineMedical for surgery and her surgeon came out and told us the surgery could take as long as five and a half hours. What??!! No one had warned me of that. He also said it could take as little as an hour and a half. It all depended on whether or not they could do the Nissen laparoscopically or would have to really cut into her stomach and they wouldn't know until they got into the OR.

They wheeled her away and Charlie and I were left to wait. Constantly checking the board in the waiting room that tells when a patient has gone in for surgery and when they are out and in recovery.

It was an exquisitely long wait even though in reality it was only just under two hours.

We went up to Tessie's room which, thankfully, was private and were told that she would probably be released in two days. The surgeon did not want her new gtube touched at all for at least twenty-four hours which meant we were still feeding her by mouth until the following day. I was happy about that because I so dreaded the time when they took away her sippy cup for good.

Tessie was doing well so Charlie went to his mom's for the night and I stayed in the room with Tessie. Around three in the morning I heard her whimper and am ashamed to admit that I had the gall to be annoyed. I was just so tired! I lay on my little hospital 'bed' and hoped she would go back to sleep. She whimpered again and I dragged myself up to see what could be wrong.

The blanket over by her belly was soaked through with blood. I quickly called the nurse's station and told them to come now and when the nurse arrived she took a look, told me she'd be right back, and ran out of the room. She returned with two other nurses and told me that Xray was on the way up to Xray Tessie's belly. I asked if Tessie was okay and she said everything was fine. I looked at her and told her that I did not want the pat answer that she was trained to give scared parents, I wanted the truth. I asked her if I needed to call my hubby to get him on his way to the hospital. She said not yet but they would know more as soon as Xray came. She also said she had paged out the pediatric surgeon and the OR and told them to prep a room just in case.

Xray came and the pediatric surgeon and thankfully, Tessie just had a lot of gas trapped in her belly and it had distended it much like a balloon about to pop. The belly distention had put so much pressure on her belly that the fresh gtube site was bleeding. All they had to do was to vent the gtube and let out the air.

We got Tessie cleaned up and her bed changed and while we were doing that I asked the nurse to tell me honestly how scared she was when she first came in. She looked me dead in the eye and said, "When I ran out of here and called downstairs, I yelled into the phone for them to get their asses up here right now!" We laughed for a minute and I said, "Well, you're very good at hiding your panic. You're sort of like the stewardess in a plane that is nose diving out of control towards the ground and you keep telling the passengers that everything is fine." "Yep", she said. "Pretty much."

Everyday the pediatric surgeon would come in and tell us not today. As in, I cannot release her today. She had to hit a very specific calorie intake and was not managing it due to slow stomach motility. Until that goal was met for at least twenty-four hours, she would remain in the hospital.

It was awful. Remember how, in previous posts I've said Charlie is like a hyper active little boy trapped in an eight by twelve cell and I am his only toy? Yeah, try it for eight days....that's right. Eight days we had to stay in that hospital while Tessie recovered from the surgery. Even the doctor was feeling bad for us. He would make rounds and come in at the end of the day, slowly enter the room and sort of shake his head and Charlie and I would slouch back in our chairs in defeat. I though I would kill Charlie by the end of it. I really did.

On day eight the doctor came in and before he could say anything I jumped up from my chair and said, "If you don't release us today, by the time you do we will be leaving this hospital and driving straight to a divorce court!" I was only half joking. The doctor laughed and said, "You're free. I'll go fill out the release forms now."


It took me a while to fully accept the gtube and it took my hubby a bit longer. Naturally The Toots accepted it right away without a single tear shed...except from me.

Imagine if everybody accepted their lot in life as gracefully and joyfully as The Toots does.

Just imagine...

Monday, September 27, 2010

Isn't it ironic...

We are heading to Childrens Hospital Boston today and it's got me thinking about the first time my hubby and I went there.

It wasn't even with The Toots.

The first time we were at Childrens was when we made a wrong turn on our way to Brigham and Womens Hospital for a second opinion on my thyroid cancer treatment.

I had, by this point, had two surgeries to remove my throid and around 30 or so lymph nodes. I was so tired and in so much pain from constant muscle spasms in my back and having been undiagnosed for so long with cancer that I couldn't be left alone with The Toots because I could not take care of her.

This was also before anyone was willing to admit that the Toodle Bug was not acting like a 'normal' baby. Especially me. I felt so absolutely miserable that the thought of having to handle one more thing, much less something as huge as what it might mean for Tessie (and if I am being honest, me), was just too overwhelming. Little nigglets of doubt would creep in about why Tessie wasn't doing this or that, but I would sweep them away as fast as they popped up.

Denial. Self protection. Whatever you want to call it I refused to focus on those nasty little doubts that wanted so desperately to be heard.

And the rest of my family and friends were the same way. I think because they were also so scared for me and my health that they thought either I couldn't cope with one more thing or that they couldn't. Probably both.

Nobody would admit what was staring us right in the face. We all even went so far with out denial that we came up with the most ludicrous reasons as to why Tessie wasn't hitting her milestones. And they all involved the fact that I could not do the same things with her that I had done with my other girls because I was sick.

How's that for a kick in the pants?

The reasons ranged from, "She isn't getting enough floor time to build up her strength in her neck and body because Joanna can't lift up and down to the floor." to "She's the third baby and you just don't try as hard to make them do the things that you did before". And my personal favorite, "You can't compare what she does with what Blake and Ellie did. All babies are different."

It really speaks to how sick I was that I let myself be deceived by all that BS. Normally I am a very practical girl and would much rather face things head on than be in denial about them.

Ah well, such is life I guess. And now, Childrens Hospital is a place that I feel the most at peace because nobody looks at us with pity or fear or shock. We are just another family. A normal family. At least for a minute.

But I think about that first drive into Childrens and how my hubby and I looked at each other and both fervently agreed, "Thank God it isn't one of our kids that is sick. Thank God we are just making a wrong turn here and not needing to bring in one of the girls."

Isn't it ironic....

Monday, September 13, 2010

Charlie's Angels...

I have been sick in bed for the past three days. I do not know what kind of killer virus attached itself to me but it kicked my butt hard which meant that I was physically not able to take care of Tessie or do much of anything for Blake and Ellie either. This would present quite a dilemma were I not married to the man that I am married to.

Charlie is the definition of a 'hands on' father.

When Blake was born he changed her first poop (and was even overheard muttering "even her poop is cute"), gave her her first bath and got up in the night, every other night, to do the night time feedings. When Ellie was born it was the exact same scenario. He was right there for everything. And he loved it (well, the poopy diapers eventually got old).

And there were many people who made comments to us when I was pregnant with The Toots about how we must be trying for a boy and wouldn't we be disappointed if the baby was a girl? I was pissed but my hubby pretty much took it in stride as he told people, "Anything that I would do with a boy I can do with my girls so why would I need to have a boy?"

And he meant it. He has taken the girls canoeing down the Saco river, White water rafting, camping on class trips at Acadia, taught them to build birdhouses, how to ride a go-Kart and a fourwheeler, made them tire swings, zip lines, tree forts, and nearly every other conceivable thing you can think of while insisting that they help so that they can learn how to do it for themselves. Often times I could be heard shouting something along the lines of, "Don't let them do that! They are going to get hurt!" With his maddeningly calm response of, "They'll be fine."

And even though everything about Tessie, her needs, and how she interacts with the world has basically been different then with Blake and Ellie, he has made sure that she gets the same 'daddy' treatment as the other two girls even if he has to tweak how he manages to do it.

I have gone outside to find him riding with her in his lap on the four-wheeler and while I stop to have a small heart attack, I can hear her giggling. Or he'll tell her he is going to take her on the sled in the snow and while I fuss about her catching a cold or something equally neurotic, he takes her out and piles the sled with blankets and tows her around the yard. Or sits outside in the evening with her on his lap in front of the chiminea with the fire dancing off of their faces while she looks on enraptured by her daddy.

These past few days I have watched him change poopy diapers, make up Tessie's formula, get her ready for bed, make sure she has had her meds, and basically do most of my job with few complaints and lots of love. He has signed permission slips for Blake and Ellie and made sure to get to both of their soccer games to cheer them on. But none of this is new for him. He has always been like this with his girls.

After all, these three girls are Charlie's Angels...

Tuesday, September 7, 2010

And so it goes, and so it goes...and I'm the only one who knows...

This has been a big week for many parents that I know. Either their kids were leaving home for college for the first time or starting Kindergarten or even their 'last first day' of high school. Most of these parents (who I've been reading on Facebook) are feeling the empty nest syndrome in one form or another. They are thrilled and excited for their kids, of course, but a bit sad and nostalgic at the same time.

When I read their posts I try to be sympathetic and wonder how I will feel when it is my turn to send one of my girls off to college. For some reason I just can't feel their pain. I have chosen to not comment because what I really want to say is, "You have no idea how lucky you are." This is supposed to happen. This is normal. And for one of my girls, The Toots, this will never happen.

Tessie will never leave for college. She will not graduate high school. I will not get to sit in the auditorium and listen to her possibly give a speech about her future or tell tales from the class trip. There will be no Grand March. No father/daughter dance. No first kiss. First love. No wedding in a white gown as her dad proudly gives her away to the man of her dreams. She will live with us until we are no longer physically able to care for her.

This is not how it was, or is, supposed to be.

And so it makes it easier to look forward, not to having Blake leave, but to this rite of passage that every child should get to experience. The same goes for Ellie. Every time something comes their way that they can possibly partake in, from sports to plays to sailing on a schooner, I encourage, because I am so grateful that they are physically and mentally able to do all of those things.

Now don't get me wrong. I know that the parents who are feeling a bit lost without their kids at home or whose kids are just starting out in 'big school' are very grateful that their kids are experiencing all that life has to offer. I also know that if my circumstances were different, I would be commiserating right along with them. Ay, there's the rub. My circumstances are so very, very different.

While everyone can understand the feelings of the empty nest syndrome, few can understand the feelings of a parent whose nest will never be empty.

Usually I try not to think so far down the road. It will be a bumpy road to say the least, filled with many twists and turns, so why bother fretting over it now? But as Blake get closer and closer to her high school graduation and Ellie hers, I can't help thinking about what does, and what does not,lie ahead for Tessie.

I can only hope it will be good. I can only pray that I am up for the challenges and rewards of always being a stay at home mom.

But keep your eye on me (if at all possible) when the day comes that Blake and Ellie do graduate. After all my big talk about how it is normal and the way life is supposed to be, chances are I will be bawling like a baby and thoroughly embarrassing myself while crying out, "No, I'm not ready to have you leave!"

After all, I need to remember that two of my babies will leave the nest some day. They will give speeches and go on class trips and have Grand Marches and father/daughter dances. They will go on to hopefully marry and have families of their own.

Aw, crap, I think I'm getting teary just thinking about it...

Friday, September 3, 2010

Anticipa-ation is making me wait...

Day four and still no seizure. I am waiting, like a kid at Christmas waits for Santa, to see a seizure rear it's ugly head. I want her to have one. I need her to in fact. It is so very, very important that she does it now. Let me tell you, it is an odd sensation to be wishing for your child to seize because, ultimately, it will be for her own good.

Every time Tess tenses up I spring like a coiled rattlesnake ready to 'capture' the event. And usually she would have had at least two by now. But you see, my Toodle Bug plays by her own rules. And right now she is refusing to even get into the game.

I know it sounds wrong to say that I want my child to have a seizure so let me explain how I got to this seemingly 'sick' state of mind.

The Toots has been diagnosed with a seizure disorder since around the age of three or maybe a bit younger. The hubby and I immediately felt like Childrens Hospital in Boston was the best place for her to go. We have never once regretted that decision.

We met her neurologist, the very knowledgeable Dr.Coulter, who, after giving her a forty-eight hour EEG, ordered a medicine called Keppra which controlled the seizures for nearly three years. It was like a miracle drug. Then two summers ago something changed. Tess began to seize uncontrollably.

We rushed her to the mainland and she was admitted into the Special Care Unit for a day and a night. The Keppra was increased and seemed to work but a couple of months later the seizures started up again and this time The Toots was in bad enough shape that she had to be taken by ambulance from Rockland to Childrens in Boston.

I rode in the ambulance with her and let me tell you, that sucked! And not for the reason you would think, that I was scared for The Toots. No, it sucked because I was riding backwards in the 'jump seat' and it bounced all over the place. But it was also funny because my little Angel was flirting with the paramedic between seizures. Giggling and batting those big brown eyes at this huge teddy bear of a man named Justin. It was just too cute.

At any rate we arrived safely in Boston and Tessie was seen by her team, given another EEG, increased her Keppra once again (now near maximum dosage), gave her an MRI and sent us home. Like before, the seizures were controlled. This time for almost a year. Then, once again, the pattern repeated itself.

Uncontrollable seizures, ambulance ride to Boston (this time Buh rode the 'jump seat') and a three day stay at Childrens trying to figure out how to treat The Toots.

To date, no matter the amounts or types of medication we have tried, and God have we tried a lot, nothing works that will completely control them. She continues to have break through seizures. To the point where I researched the Ketogenic Diet and we began that as a treatment. Even though the diet has many health risks, we figured we did not have much to lose because the seizures were beginning to not respond to emergency interventions. In short, we were losing the battle and fast.

When she first started the diet we thought we had found the miracle we had been looking for. For three whole weeks Tessie was seizure free, then BAM, like a thunder storm after a heat wave, they were back. At first they weren't bad. Maybe one every ten days. Then every five and now nearly every two.

I try not to dwell too long on what this may mean for The Toots. It is just too scary to even consider. But like a mosquito buzzing in your ear that you just can't seem to ever quite swat away, I feel the fear trying to gnaw it's way into my brain and heart. I refuse to cave into it.

Failure is not an option.

And so we are back to what prompted this EEG. The doctors, all of them from Epilepsy to Neurology, to Genetics, to her pediatrician want the results of this monitoring. Hopefully it will tell them something useful. Something that will break this vicious cycle. I pray they find the answer but I fear that there isn't one.

But right this minute, right this very second in fact, I just want that kid to have a seizure so we have something to work with.

As I finish this blog post Tessie is in bed with Baby Tad singing her lullabies.

Still no seizure.

And so I continue to wait with bated breath...

Wednesday, August 25, 2010

Laugh and the World Laughs with You...

Cry and you cry alone.

Had to finish that little saying. Plus, isn't kind of true? Think about it. How many times have you cried and anyone else really feels your pain? Really gets it? Now think about the times you have laughed your butt off. I bet you are smiling just thinking about it. If you were within earshot of another person I almost guarantee that they were laughing right along with you even if they had no idea what they were laughing at. Because laughter is contagious. Thank God.

The reason for my rambling is that as I was getting ready for bed last night at around nine-thirty or so, I heard The Toots laughing in her bed. I am talking hysterical, gut wrenching giggles. And I just cracked up. My hubby and I were in our room, looking at our little 'spy on Tooties' TV monitor and laughing right along with her. Talk about easing off the tension of a long day. What a great way to go to sleep. With your child's laughter ringing in your ears.

What was she laughing at? I have no earthly idea but it was funny.

I like to try to think of things that she could be giggling about. Was it because she had just woken up and was remembering a funny dream? Was there something on her bedding that struck her as funny? There is a mural painted along the sides of her bed of a castle and princess, waterfall and unicorn flying...was it that? Was she being 'visited' by one of her guardian angels (and yes, I know that sounds crazy but it makes me feel better to imagine that I have a little extra help from the Big Guy when it comes to watching over the Toodle Bug so leave me alone) and they were just a hoot?

Often times, I will sneak into her room when she is laughing like that because the joy is palpable. You can literally feel it prickle your skin and tingle your spine. It is an awesome feeling to be around The Toot's laughter. If her sisters are home and they hear her, they will also run to her room to take part in the fun. They can't resist it either.

Plus I like to try to see what she is looking at to see if I can figure out what it is that is bringing her such fun. Often times she is literally waving her little hand around, spreading her fingers wide then waving them an inch or two from her face and then going off in to gales of laughter. I have even tried doing this while laying in bed to see if I can get the "funny" in, no, but it always makes me smile when I am doing it because (one):I feel like a crazy person and that kind of makes me smile (albeit a bit nervously because maybe I am losing it) and (two): it instantly makes me think of Tessie laughing and that always makes me smile.

Like I said before, I am forever trying to figure out what is making her laugh so hard, all alone in her bed. And maybe it is something that is so simple it often gets overlooked:

She sees the joy in simply being alive. No strings attached. No waiting on someone to make her happy. Just unconditional faith that she will be taken care of and loved. She is not jaded by the body and world that she has been thrust into. Just happy.

Plus she knows she has a mom in the next room, laying in bed, waving her hand in front of her face, with a smile on her lips and a daddy who has also done the same thing....

Wouldn't that make you laugh?...

Sunday, August 15, 2010

The Bean is on the Scene...

My girls are awesome.

There. I've said it. I know that you shouldn't brag like that about your own kids but I can't help it. Blake and Ellie and Tess are amazing. And I plan on writing about each of them (well, Blake and Ellie) in the near future but for now I am going to tell you a bit about my other "daughter", Bethany. The Bean.

The Bean has been on the scene since she and Ellie were practically in diapers. They became best friends in the first year of preschool and have not left each others side for more than a day or two ever since. They are the perfect complement to each other.

Ellie tends to be the 'straight man' to Bina's 'stand up'. Sort of like the female version of Abbott and Costello or Laurel and Hardy or even Jerry Seinfeld and George Costanza. They are a riot together and the best part is, they love each other even when they are totally sick to death of being together. Just like real sisters.

And being around them reminds you why having a 'best' friend is so crucial. Who else would put up with your silliness, weirdness, stupidness, moodiness, except a best friend? Who, but a best friend, would call you to check and make sure your little sister is okay because she heard the ambulance pager go off? Who, but a best friend, would be able to stay by your side, through the often times very scary journey of having a severely disabled little sister and make you laugh when you would rather be crying? Who, but your very best friend, would call your house "home" and your mother "mom"?

That is the kind of girl The Bean is. She has stuck like glue beside Ellie through all of the craziness and never let anything get in the way of being there for her. The Bean has learned how to "vent" Tessie's GTube, which, in all honesty, is kinda gross. She is learning how to give The Toots her meds and loves to crush them in the pill crusher. The Bean even offered to change The Toot's diaper the other night (on the condition that it had "no poop in there") The Bean handles pretty much anything that The Toots dishes out with humor and compassion.

When The Bean comes into the house Tessie will look for her and she will never, ever forget to come say "hi" to the Toodle Bug...even if she is only popping in for a second to pick up something she has forgotten. She will talk to Tessie, kiss Tessie, keep an eye on Tessie, read to Tessie, snuggle with Tessie and just plain love Tessie to the point that you can't help but be proud just to watch her because her heart is so big and her love for Tessie is so genuine (and, of course, Tessie adores her). And you know, as only an adult knows, that many, many kids (and adults for that matter) would have faded away when the going got tough.

Not The Bean.

She is here for keeps and we love her. To the point where I no longer treat her as my daughter's friend but as my daughter. She has chores, gets yelled at, gets hugs, gets told "I love you" and I've even threatened to "ground her" because she is now one of my own. When she does something good, I'm proud and happy for her and when she has been, ahem, naughty, I will scold her even after her own mother has. She drives me crazy at times and has me hysterically laughing at others. In short, she is an awesome kid.

I also have another name for The Bean; The Phantom. She knows why.

Who's ready to get their arse kicked at WhoVilleopoly? Anyone?? Phantom, um, I mean, Bean??

She knows I love her....

Tuesday, August 3, 2010

Buh's Manifesto...

This little adventure was the trip to Boston that ended in a tattoo for Buh and me. I guess that I was so focused on the 'Inked' part of the trip that I totally spaced out what happened when we first struck out.

Since I knew I would be way too tired to drive straight through from Rockland to Boston, I asked Buh if she minded driving for the first half. In my mind the obvious point to change drivers was the Kennebunk Burger King rest stop. You know, nearly out of Maine but not quite.

Buh took this to mean that we would switch in Portland...right before the three to four lane highways began. You know, at the end of Maine.

Naturally, we both thought that the other person understood where the switch off would take place. Yeah, right.

As we were approaching Portland on 295 Buh asked where she should pull off to trade places with me. I sort of looked at her like "huh?" and said that I thought we were changing in Kennebunk at the rest stop. She did seem to grip the wheel a tad too tightly but nodded and kept going. I didn't think anything of it.

I should have heard the alarm bells that were clanging loudly when Buh then proceeded to get onto the interstate, see that we now had three lanes of traffic, hitched herself practically on top of the steering wheel, and said to me that she thought that Maine ended when the two lanes of highway ended. Again, my reaction was "huh?".

I did not realize that she had never driven south of Portland before (literally as the driver) so that was her frame of reference I guess. I told her that we were most definitely still in Maine and she had only about another fifteen minutes of driving and then we could switch places. I, mistakenly, thought this information would calm her. But when I chanced a glance over at her I could see how very wrong I was.

She was white knuckling the wheel, eyes staring straight ahead and wide with panic, sitting as close as she could have possibly gotten to the steering wheel without it getting perverted, and I think she might have even been sweating.

I decided she needed some words of encouragement and basically told her to suck it up and that she was not going to turn into the type of woman who could not drive outside of Rockland. I know, she is blessed to have me in her life.

Now, of course, I was having my own anxiety about driving in Boston and just could not muster up any sympathy for Maine driving.

We made it to Kennebunk and Buh went flying in on nearly two wheels in her haste to get out of the driver's seat. She had us twirling around that stupid rest stop a few times before I asked her what the hell was she doing? She informed me that the sign said no entrance so she didn't know where to get in and I lost it. I was laughing so hard as I told her to just pull over anywhere in the parking lot and stop the crazy circling pattern she had going.

We came to a screeching halt, checked on the Toodle Bug and switched places. That was when Brianna left and Ted Kaczynski, you know, the Unabomber, took her place.

We got back on the highway and when I looked over at Buh she had on HUGE sunglasses like you would wear if you were about a hundred and had just had cataract surgery, she had pulled the hood of her sweatshirt up over her head and was all hunched in on herself with her Ipod ear buds in listening to (and I'm guessing here) some Christian Salvation. She looked completely insane.

And she wasn't talking to me. At all.

I was kind of worried but still thought it was funny. However, I was freaked out enough to leave her alone. The only person talking to me was that 'Bitch in a Box' Garmin GPS. I was fluctuating between being in hysterics over what I was witnessing in the seat next to me to being really, really irritated. I mean, I was nervous too and a little company would have been nice.

We got to the Tobin Bridge when I finally broke the silence and said to Buh, "Hey, Ted, when you're all done writing your next manifesto over there in Crazyville you wanna help me navigate just a bit?!"

With a very reluctant and put-upon sigh she put away the ear buds, put down the hooded horror and started to pay attention to street signs. She only spoke when necessary.

We made it to the hotel and I swear to God, before I had even set down my bag, she had herself and The Toots in pj's and in bed with the covers up. I just cracked up. And by this point, she was no longer having a nervous breakdown so she even joined me. We laughed over that for hours.

She finally fessed up that she had gotten really nervous driving on the three lane highway and that was what started the whole downward spiral and that she was mad at me for making her drive when she was so nervous. She went all 'Unabomber' because she needed to just try to remove herself from the situation for a bit.

I was very compassionate when I heard why she got so nuts...

and then I made her drive home...

Tuesday, July 27, 2010

The Play's the Thing...

I have often wondered what people think when they see us out and about at sporting events, parades, school plays, and things of that nature. I guess what I mean is, do they realize what actually happened behind the scenes so to speak, to get us there?

It is a big deal to take the Toodle Bug pretty much anywhere. Mentally, emotionally and physically. We have to make sure we have her meds, diapers, food, oxygen, etc. Plus just the act of getting her out of the house, getting her wheelchair into the car, getting her into the car seat, get to where we are going and then get out the wheelchair or stroller and get her in it and on and on.In fact, there are many times I just don't go somewhere because of the extra effort involved.

Sounds awful, I know.

The problem is, there is tons of planning for an outing with a child that you really can't plan on sticking to the plan...if you know what I mean. She is unpredictable, to say the least, and that can cause mucho anxiety when taking her places.

Will she have a seizure? Will she have a retching episode? Will she get all loud and shrill? Will she toot? Will her feeding pump alarm go off? Will her Gtube button get pulled out? Will other people be annoyed if she does get loud or, well, tooty? Will she get stared at? Will anyone talk to her or go by as if she isn't even there? As much as they love and adore her, will Blake and Ellie be embarrassed if anything should happen? Will we? (and yes, I do get embarrassed at times. Not by Tessie herself, but by some of the 'noises' that can escape her)

These are the questions my hubby and I ask ourselves before taking her to public events. It probably isn't very politically correct of me to admit that but too bad. It is all part of my reality and it isn't all rainbows and unicorns.

And I will agonize for weeks about whether or not to have her be a part of the elementary school plays. I go back and forth...first,"yes she'll do it because she deserves to be a part of it and she will probably love it" to, "No, what if she has a seizure up on stage in front of everyone?"

Plus, if I am being brutally honest, I hate seeing her up there in her wheelchair, head down, trying to go to sleep to escape the chaos. I hate seeing the other kids be all cute and funny and hamming it up for their parents while The Toots doesn't even seem to be aware of what is going on around her. And most of all, I'll hate myself for being so small and petty and not being able to just enjoy the moment.

And I will be sitting in the audience with a smile plastered on my face, most likely fidgeting from the stress, trying to act like every other parent there while, once again, wanting to bawl my eyes out.

It is during those moments when I want to jump up and say to everyone in the audience, "Tessie is funny too! If you could have just seen her do (fill in the blank) you would have died laughing! And she is so smart! She can make choices and say Mama and..." Well, you get the idea. I want you to think that my kid is as great as yours and everyone else's. See, very small and petty.

But as parents, don't we want everyone to see our kids at their best? Their cutest, funniest, smartest? But I guess most of all, I just want people to understand that there is a person inside of my Toodle Bug. And she is amazing. She is smart and funny and loving and has a wicked sense of humor. She can be naughty, tricky, and even a bit manipulative.

In short, as my niece (shout out Dreyenn!) once put it, she can be "just like a real kid!"

Now before I hit "publish" and throw this out there for everyone to judge I want to assure you of that fact that I realize most of my worries and hangups are MY worries and hangups. That most people who see Tessie will stop to talk to her or tell me she is cute and mean it, and even tell me that they were happy that she was in the play and were genuinely happy for her.

What can I say, I'm working on it...

Tuesday, July 20, 2010

Girl, put your hazards on....

This has been a bad week for The Toots. She hasn't felt great and was having some pretty bad seizures which prompted phone calls to every doctor that we knew for advice which almost always culminated in, "You know her best. What do you think?" What I think is that I called you so tell me what to do! God!

Anyway, at one point Buh and I thought for sure Tessie would have to be taken to the mainland to the hospital. Thankfully, The Toots rallied and got better all on her own (knock wood) but it got us talking about one very memorable and harrowing journey across Penobscot Bay with the Toodle Bug...

About two years ago, for the first time since being treated for a seizure disorder, Tessie was having breakthrough (meaning her meds were no longer controlling them) seizures. I called Doc Stephenson who instructed me to meet him at the ER. We got a medical priority to get our van on the ferry and headed across the bay.

Now this was before things had escalated to the point of us realizing that we should have oxygen with us at all times as well as probably take a plane over and not chance a long ferry ride. Who knew it would get so bad? Certainly not me, the Queen of Denial.

We had practically just left the dock when The Toots started seizing again. She was in her car seat which is very padded so we decided (my ever faithful Buh was with me as usual) that was the safest place for her to be. We started timing the seizure. Fifty seconds. Okay, not so bad. We could deal with that.

Five minutes later, another seizure. A bit longer than the one before. Alright, kind of strange to have another one but we were still in control here. No sweat. However, in the interest of trying to preserve what little privacy we could given our proximity to other cars and passengers on the boat, we put up blankets around the windows to try to keep everyone from seeing in. I'm sure we looked quite insane.

Five minutes later another seizure. Five minutes after that another one, and so on. With each one lasting a bit longer than the previous. Shit. What should we do? We were literally stuck in a no mans land as far as help was concerned. So I called the most amazing Dr. Jen and was talked down off of the ledge that I had mentally talked myself on to.

So The Toots was doing this for probably close to half an hour when things took a really scary turn and the next thing we knew she was seizing while gasping for air and literally turning blue. She had never stopped breathing before and it completely freaked me out. I am ashamed to admit that I was paralyzed with fear. I sat frozen in my seat staring at The Toots and thinking "I am watching my child die". Buh and I looked at each other, wild eyed with panic, and I believe Buh said something along the lines of "Oh shit!".

The next thing I knew Buh was throwing open her car door while almost simultaneously opening Tessie's and snatched her out of her car seat to get her into the front with us. Seeing Buh spring into action jerked me out of my paralysis and I grabbed the Diastat and by the time Buh got back into the front seat I was already pulling at The Toots pants and diaper and shoving the medication into her little bum.

We heard her take a huge breath sort of like "Baaaaahhhhhhh" and she started breathing normally again. Buh and I were trembling all over and Buh had one small tear leaking from the corner of her left eye. We were trying to decide what to do because by this point we were quite literally in the middle of the Bay. Equal distance from any kind of help.

I ran up to see the Captain and told him that we were in real trouble and I didn't know what to do. He told me he could stop the boat and call the Coast Guard to bring out a paramedic but that it would take a while and that as long as Tessie was breathing he thought we should keep the boat moving toward the mainland and help. I agreed and raced back down to my car.

The Toots was doing okay for the time being and the Captain had a crew member come check on us every few minutes to see if we wanted him to call to have an ambulance waiting for us when we got off the ferry. We decided that since she seemed better we could drive her ourselves to the hospital. The crewman told us he would let us off first so we could get moving.

The Toots did okay for the rest of the trip but as the boat was docking, she started seizing again. Buh was twisted over backwards to try to help maintain a safe position for her and thus had her butt stuck out towards to windshield...and everybody on the boat. The same crew member that had been checking in us peeked in my window to ask how she was doing, saw her seizing, Buh's butt in the air and me with my eyes probably bugged out of my head as I shrieked at him, "Not very good!"

I often wonder what he thought at that moment because the look on his face seemed to express pure disbelief at what he was witnessing. The crew held back the passengers to let us go and, amongst some very curious looks, I stomped on the gas and went flying up that ramp and on our way.

We hit every red light from the ferry to the hospital. Every single one. Buh, who couldn't believe that I was stopping for them, actually yelled at me, "Put your hazards on and go through them!" I told her that hazards were useless and meant nothing and she cried out "Well pregnant people do it!" I assured her that if Tessie stopped breathing again I would put on the hazards and not be stopping for anything but as long as she was breathing I would not endanger her life any further by careening wildly through stop lights.

Even without the hazards on we got there in record time and were whisked off to a room. The Toots had a rough time of it for a day or so but all's well that ends well.

And remember, in the event of an emergency Buh says...Girl, put your hazards on!...

Saturday, July 17, 2010

Seizures, seizures go away...

I am so sick of dealing with seizures. I am sick of worrying about them, sick of timing them, sick of logging them, sick of discussing them, sick of making sure we do not run out of all of her medications that are supposed to be controlling them but aren't, sick of hospital stays because of them,and most of all sick of the completely helpless feeling I have when The Toots is having one.

Try to imagine planning for a storm that could very well be life threatening and may occur any time and any place without warning. It will be a storm that you must face head on in order to deal with. There is no underground cellar. No safe place to hide from it's wrath. And just to add a little more drama, it will be all up to you to decide how to handle this storm in order to save the life it is endangering.

There are times I am in tears after the 'storm' because it has scared me so badly. Other times I could quite literally fall asleep from the adrenaline rush it produced in response to dealing with it. But mostly, I am just pissed.

Pissed that in the year 2010 there are no cures for this disease called Epilepsy, and not much money being spent on searching for the cure. Pissed that if President Obama, or Bush or Clinton had had a child with this disease you can bet your ass there would be plenty of funding available for that research. But mostly pissed because as a parent, job number one is to keep your child safe, and when The Toots is in the throes of a seizure, I feel so damned helpless.

Every morning and every evening my hubby and I pump enough meds into the Toodle Bug to put down a Rhinoceros on an African Safari because they are supposed to "control" the seizures. Those are just her normal, everyday meds. Not to mention a life changing and semi-risky diet to try to gain some kind of control. And when the 'storm' breaks through those defenses we play the wait and watch game.

This involves watching your child, your BABY (because aren't they always our 'baby'?) contort their face and body and thrash around like a shark thrown on the deck of a boat. They have no response to your consoling words or your soothing stroking of their body, in fact they have no idea you are there, but you continue to do it anyway in the vain hope that they somehow understand that you are trying to help them. Then the perfect storm strikes and a rogue wave appears as if out of your very worst nightmare... they stop breathing.

The whole time this is happening you have been keeping track of the time because there will come a minute, a split second when you make the decision to give the Valium and Oxygen because your child has stopped breathing and you have realized that they will not break this one on their own. There are pretty precise guidelines for when to give this medication but, ultimately, it will be up to you and your instincts to realize exactly how out of control things are spiraling and based on that, when and how, to react. And if you are very, very lucky, you will have a Buh or a Sheila by your side who is fighting just as hard as you are to beat back the 'storm'.

Once the decision has been made you will act with precision and authority and will do what must be done to get your baby back to you. Once the med goes in, within several seconds to several minutes she will heave a big sigh and look at you with a bit of recognition. But for just a second, as you push that med into her little bottom, the guilt of knowing you are literally "doping" up your own child because that is all you can do to help them will break your heart. Mostly you will just feel relief that the medication worked because there is always the fear that "this" will be the time that it doesn't.

The Toots will then be in a kind of haze from the toll the seizure and subsequent drugs have taken on her body. She will drool. A lot. She will not be the happy, giggly girl we are all used to. She will stare off into space in a drugged stupor. This may last for several hours or all day. I will immediately put on that G*damn Spongebob Movie to try to get her to smile or even respond to me and I will let her watch it all day if I have to just to see her smile.

Tess has had two seizures in the last three days that, when totaled together, lasted approximately fifteen minutes. Could you tell from all of my whining? Yet, as I am typing this she is literally laughing out loud while I piss and moan about how "sick" of seizures I am to those of you who have actually read this whiny little post through to the end...which makes me wonder, maybe someone needs to shove something up my butt?

Just a thought....

Thursday, July 8, 2010

A Jolly Good Time...

We are getting ready to make our annual trek to Rangeley in a couple of days and it got me thinking about last year's trip. I was going to write about our adventures during our stay but while I was writing this I realized that the adventure really began on our way to get there.

It all started with a very foul odor emanating from my little angel, The Toots. Okay, now I understand that poop doesn't exactly smell like roses but Holy God in Heaven this was a stench that curled your nose hairs and sent lesser men and women (hello dad, Blake and Ellie) screaming from the room. You just knew that things in her belly were not working properly.

Doc Stephenson was called ASAP and sent us to the hospital for bloodwork, urine analysis and yes, a stool culture. My ever faithful Buh and I took her to the hospital and got the blood and urine done but, let's face it, when you really want it, the poop won't come.

We were given 'supplies' to collect the specimen for whenever it did decide to appear with strict instructions to get it to a lab within an hour or it would be no good. Buh and I had to go to Portland before leaving for Rangeley anyway so we decided to try to get her to poop there and scoot the poop on over to the NordX lab in Scarborough. Easy peasy, right? Yeah, sure.

As we headed to Portland in near ninety degree weather in my less than a year old van, we discovered that the AC was broken. Now, for most people this would be an annoyance but not really a crisis, but when you've got a kid who has seizures and reeking spoiled onion smells from her diaper, let me tell you, it is a HUGE problem.

I called Jolly John who, when we bought the van assured us of their 'award winning service' to be told that 'no, they had no time to work on my van'. I lost it. I am not joking here. I had a total Lee Osgood spell right then and there on the phone with the lady and finished up with, "So this is your award winning service? I've got a disabled child here who has uncontrollable seizures under the best of conditions, I do not even want to imagine what this heat will do to her!" Their response? "Everybody's got problems, lady." I was beyond pissed. My final response? "Well now so do you because I will be there in less than an hour and somebody WILL be fixing this van at that time or I will sue you for everything you've got!" Click.

Buh was giggling nervously during my exchange with Jolly's and then we were both laughing at the absurdity of the situation. I mean really, here we were, flying down the highway headed to yet ANOTHER doctors appointment, eyes glued to Tessie to make sure the heat wasn't making her sick(er), with poop supplies in hand ready at a moment's notice to scoop the poop and heading towards my showdown at a place called Jolly Johns while still needing to get to Rangeley which was the original destination.

Yep, like I've said before, there is just no making this 'shit'(sorry, couldn't resist) up.

So we went to the appointment in Portland and on the way out, as we were getting The Toots into her car seat we smelled a familiar stench. The Toots gave us the best of her worst so to speak and we packaged up the poop and sped away to drop off our prize at the lab in under the one hour window. And let me tell you, for those of you who have never had the pleasure of this experience, walking into a crowded place with a vial of poop in a CLEAR baggie and having to explain out loud what you are doing is an exercise in acute humiliation. I made the walk of shame out of there and we zoomed off to my, um, appointment(?) with Jolly.

We arrived and I told Buh, get Tessie out because they were going to see what "everyone's' problems really looked like. "Bring her feeding pump and 'jump bag' too. We aren't going to spare them anything!" I ordered to poor Buh.

The lady behind the counter looked up when we came in and then did a double take when she spied the Toodle Bug and all of her gear that goes with her. I gave her a glare that would have made my Aunt Sharon proud and said "I'm here to get my AC fixed now!". She took one look at my face, threw another sideways glance over at Buh and the Toodle Bug, and said that they would get right on it. I love to watch people's reactions when they are shown a reality that they can brush off as just another person's 'problem' when they think they will never have to deal with it themselves until a bitch like me shoves it under their nose!

So good ole' Jolly repaired the AC and even went above and beyond by fixing a recall problem that I was unaware of.

And in the end...

Gas to get to Rangeley by way of Saco...$60.00. Repairs to AC and Recall...$0.00. Getting to watch that ladies face as we brought in Tessie to sit in the waiting room during repairs...PRICELESS!!

Friday, June 25, 2010

The bird is the word...

It was a Sunday afternoon. Blake and Ellie were at my dad and step-mom's for their usual Sunday night dinner. Buh was staying late to help with The Toots. Charlie was off island for the night. It was just Toodle Bug, Buh and myself when it happened...

I was so freaked out. I started screaming, Buh was screaming, and Tessie was, well, laughing. I needed to get us help and fast. I called my dad and yelled into the phone, "You have to come help us! Come now!" Dad is not prone to over-reacting and even sounded a bit annoyed when he said, "What the hell is the matter now?" Sheesh! I guess he'll change his tune once I tell him what I am up against.

"A bird flew into my house and is flying all around!", I screamed a bit hysterically. "I can't get it outside and I am really freaked out that it might attack us or Tessie! You need to come NOW!"

As cool as a cucumber he says "Well, what kind of bird is it?". What kind of bird is it?...what difference should that make?! "It's a chickedee!", I yelled into the phone while diving for cover and shrieking like a crazy person.

It was at this point in the conversation that dad showed a little emotional investment with my predicament...he laughed.

"A chickadee?? I'm not coming over there for a chickadee! Maybe if it was a crow or a seagull or something, but for a chickadee? Just leave your door open. He'll fly out eventually." Well thanks for nothing.

I stared at the phone, just listening to the dial tone because he had hung up (while still laughing I might add), before I slammed it down and looked to my ever faithful Buh for help.

We decided that the best course of action was to, in fact, leave the door open while she climbed the beams in my house, waving a piece of a shirt to scare the bird into flying out. Nope. The bird just became frantic and was zooming from one end of the house to another as Buh waved the shirt around her head like she was at some topless beach party in hell.

Important fact: I have a cathedral ceiling in my living room that goes up for about eighteen to twenty feet. I also have a huge window in the upper part of the living room. Guess where the bird was trying to get out? You guessed it. It kept zooming into the loft on the third floor and then doing a one-eighty and zooming back to that window. Hard.

Okay, this clearly was not going to work so on to plan B. Buh sat on the couch with The Toots and bodily covered her so she was protected while I flung a coat hanger repeatedly up to the ceiling trying to get the bird to come down.

With each upward throw of the hanger I'd yell like some Viking Warrior woman, "Protect Tessie!" Then I would scale the hanger wildly into the air while Buh covered Tessie and waited to see where the hanger would land...which, nine times out of ten, was on top of Buh. She bore it like a champ.

The 'protect Tessie' plan eventually came to a halt when I hit the bird with the hanger hard enough to have it twirl like a whirligig to the floor. Uh-oh.

"You killed it!", Buh yelled at me in a very accusing tone. "I didn't mean to, I just wanted it out!" I yelled back rather defensively. I proceeded to get on the wood stove mitts and picked the poor little thing up. "It's alive!", I rejoiced. Apparently I had only stunned it with the hanger. So I placed it oh-so-gingerly on my porch and went to get it some water to try to revive it. By now the little birdie was coming to and stretched it's wings and flew away. I slammed the door shut, slumped onto the couch with Buh and Tessie and we laughed hysterically for about twenty minutes.

A little while later my dad called. I picked up the phone and said, "Hello?"

His only reply was to start singing..."Bird Bird Bird, the bird is the word. I said the bird bird bird, the bird is the word."

He was still laughing...

Tuesday, June 22, 2010

My Birthday...

Hey there...this is Tess. You might know me as The Toots, Toodle Bug or Tessie. I have taken over mama's mind (it was really easy) for a minute to tell you about my birthday.

First, I woke up and mama and daddy kept telling me "Happy Birthday, Toodies! You're seven years old now!", as if I didn't know that. Then Buh came and said the same exact thing before getting me up and giving me a bath. I love my Buh!

After my bath, mama brought out this ridiculous outfit and told Buh to dress me in it. It was a cowgirl shirt with a fringe no less, a pair of jean capri pants, pink bandanna, pink and white cowboy boots that were three sizes too big and a big pink cowgirl hat with a tiara on it! I looked nuts! Not to mention it was about a hundred and eighty degrees out! Wow, mama.

Well, I dealt with the shirt, pants and bandanna okay but no way was I going to be traipsed around in that hat and those boots. I promptly kicked off the boots and threw back my head so that the hat wouldn't stay on. Mama tried three times to put my boots and hat back on but I quickly showed her that I meant business.

One of the things I love most about my mama? She knows when to just let me be. She told Buh to never mind the hat and boots as long as we got one photo with them on. Hehe.

Next, mama and Buh put on my Spongebob movie. Well, okay, this is more like it. So I settled back on my favorite spot on the couch and prepared to enjoy the next hour and a half. I was perfectly happy to sit there and watch my show but no, mama breezes in and says to Buh, "You guys ready?". had better be talking about Buh and Blake because there's no way that I am ready to go anywhere.

They really do take advantage of the fact that I cannot run away from them.

So we're off in the van. Mama, looking a little stressed if I must say, Buh, in a very weird hat and her scrubs, and me, in that ridiculous get up minus the boots and hat with a scowl on my face to show them that I was definitely NOT ready to go anywhere!

We arrived at some farm with horses and chickens and cows. It was cool but I was mad! All I wanted was to finish my movie. And now I am here, in this unrelenting heat, flies buzzing around (and I'm pretty sure I smelled poop and it wasn't from me) with everyone telling me over and over again, "Happy Birthday".

Well, I quickly snatched back control of the situation. I went to sleep.

Mama forced me awake (by putting cold water in my hair;real nice) once when a cute little miniature horse was brought out and I did like to touch her but I decided there was just too much chaos around me so I went back to sleep.

The rest of the party is pretty much a blur to me. I know all of my friends had fun and I am glad. I did wake up at the end of the party after pretty much everyone had left, and I got to ride on a great big horsie with my daddy and I loved it!

When I got home I got to lay in bed and take a nap with mama. That was pretty nice.

Later, all of my family came and I got to open a few presents. All in all, it was a good day even though I slept through most of it. What can I say...

Hey, it's my party and I can sleep if I want to!

Saturday, June 19, 2010


I have a tattoo. Most people who first see it are shocked and will look at me very skeptically and say, "YOU have a tattoo?" Why, yes, yes I do.

I got 'inked' in February of 2008. It was after a trip to Childrens Hospital in Boston. My first trip that I took without my hubby. Just me, The Toots and Buh, which meant I had to drive in Boston. Gulp. For an island girl that is really quite a feat. And it really made me feel empowered as silly as it sounds. Hence the tattoo.

I was clearly on an endorphin rush that stemmed from my driving in Boston and getting out alive. I was drunk with power. High from the thrill of realizing that I could drive in one of the most nonsensical of city driving situations that man had ever created and not only hold my own but manage to cop an attitude that would have made any Masshole proud. I could do anything!

Which is why we're back to the tattoo.

Buh had already gotten a tattoo a few years earlier and had been trying to talk me into getting one for quite some time. I always held firm that I was not a tattoo kind of girl. Besides, any tattoo is bound to lose it's luster with age and weight fluctuations if you know what I mean. Plus, my hubby does not like tattoos. You leave this world the way you came in is his motto. No weird piercings and no tattoos.
I totally agreed. Until Boston.

So really, it was his fault, right? If he had been there like he always was in the past on our trips to Boston, this would never have happened. But for some crazy reason he thought he ought to stay home and go to work and try to support his family. What can I say? Sometimes there's just no reasoning with him.

Okay, back to the tattoo. Buh finally talked me into it and so I drew up a little design because I wanted it to be special and unique. After all, this would be the only tattoo I would ever get so I wanted it to really mean something to me. I ended up with a grouping of four stars that were connected by lines that made the shape of a rough heart. Inside each star was the first initial of all three of my girls plus my hubby's. I thought it was perfect. Tiny and perfect.

Back in Rockland the next day, Buh went in to the tattoo parlor and made our appointments for two hours later. I decided to get something to eat so I wouldn't faint if it hurt. Buh did not. She was a pro at this, remember? Never mind that she had a phobia about needles. Never mind that she popped a valium before going in (in case she had a panic attack she told me). She was so smug. Teasing me because I was nervous, giggling like a school girl and flouncing around the tattoo parlor picking out her ink. Remember what Karma caught up with poor Buh mighty fast.

But I am getting ahead of myself. Remember, we had the Toodle Bug with us so what were we supposed to do with her? We couldn't just leave her in the van and our appointments were both booked at the same exact time so naturally we wheeled her in.

Well...the looks on the faces of those poor tattoo artists were just priceless. I think they had to literally lift their jaws up off of the floor with their tattooed hands. I mean really, think about comes Buh...cute, young, flirty, funny and right behind her me...not young, not so cute, not gonna flirt, all business and oh yeah, pushing a severely disabled little girl in a wheelchair. I don't think they had any idea what to make of me.

Anyway, they regrouped pretty quickly and I explained that we had to bring The Toots in with us. No problem they assured me. Then The Toots ripped off a toot that would have put an old man to shame. I mean LOUD. And an odor the likes of which can only be replicated by evil cartoon characters twirling handlebar mustaches in lab coats with beakers and bunson burners boiling away. One of the guys jerked his head toward The Toots and the other tried to politely turn away so we couldn't see him laughing?/puking?/ take your pick. I quickly apologized and told them that this would happen frequently and I could leave if they preferred. Without missing a beat the guy who had jerked toward Tessie said, "we've definitely seen and smelled worse in this place. Great big men have fainted or puked or both. Whatever she dishes out we can take." Okay...

I get into one chair and decided that my tattoo would go on the top of my foot. My logic was that it would not stretch with age or fat and if I ended up not liking it I could cover it with a sock. The guy informed me that I had picked the most painful place on the body to get a tattoo. I told him that I had been through natural child birth three times and had just driven by myself in Boston. Let's go.

Holy sweet shit, that hurt! I'm talking pain that you almost can't believe is happening. I actually started chanting inside my head "you're good, you're okay" over and over.

Meanwhile Buh, the old pro, was in the chair right behind me. She was getting a lily on her back and after about ten minutes I heard a very weak, "you gotta stop. I'm gonna pass out or puke or something."

We all stopped and looked and she was as gray as a cloudy day. I'm talking walking dead gray here. I thought she was going to faint for sure. The guy that was working on her handed her a great big gumball and instructed, "chew!" Buh was so weak she could barely chew the gumball and I was afraid that she was going to choke on it. But she managed and finally, after about twenty minutes or more, she could sit upright again and the guy got back to work on her tat.

The Toots just sat patiently in her wheelchair staring at us with a look that clearly said, "WHAT are you two up to now?!"

By this point my tat was all done and who do you suppose was the smug one then? I was laughing so hard at Buh and, yes, it was probably a teensy bit mean of me but come on...after all that teasing she had done to me before her near fainting? I just couldn't resist.

At any rate, an hour and a half later we rolled The Toots out of there and were on our way to the ferry. As we left the tattoo parlor the guy said to me, "Come back when you want another one." "Thanks, but this is it for me." I said as I went out the door, my foot all bloody and wrapped in saran wrap. "You'll be back! They're addicting. Nobody ever gets just one!" He called after me. Okay buddy, I thought to myself. Nobody has probably ever rolled in with a kid in a wheelchair either, but I did. One is all I need or want.

All things considered, my hubby took it pretty well that I had gotten a tattoo. Especially when I assured him that it was a one shot deal. He even said that he liked it.

This year I will turn forty. We are getting a group of girls together to go to New York City to celebrate. I'm thinking that it might just be time for another tat...

Something special. After all, this will be the last one I ever have. Right?...