When Tin meets Yin...

In August my back spasmed worse than it had in years. I mean, I was quite literally down and out. And with only a mere four days until I was going to be able to scratch an item off of my bucket list by seeing Billy Joel at Fenway Park, I was in a real pickle.

Out of desperation I did a google search of DOs (Doctor of Osteopathy) in my area, found one who's website I didn't hate, and made my desperate plea to PLEASE GET ME IN SOON BECAUSE I HURT!!! The good doctor had just had a cancellation and told me to come in the next day for treatment.

Long story short, she helped me out and even got me out of pain enough to go see Billy Joel. Yay! I have been going to see her almost weekly ever since. It helps calm my fibromyalgia pain to a more manageable dull roar because my body responds really well to OMT treatments and honestly, I just get a kick out of the doctor. She does some energy healing work along with the traditional OMT stuff and, since I am more of a, well let's just say... traditional... girl,  the new age energy work stuff makes me chuckle.

But I have to say that I've even brought Tess to her and have even had her go back about once a month (and just to let you know what kind of person she is, she doesn't take Tess's insurance and knows we can't afford her fee without insurance so helps Tess free of charge). Tess likes the OMT treatments but you can see her really relax with the energy work. I don't know what to tell you. I was skeptical of the energy healing stuff but between Tess and myself, I have to admit that there's something to be said for it. The OMT stuff is where it's at though. If you've never been to a DO for an OMT treatment, GO! You'll thank me.

Anyway, I digress.

The good doctor talked me into going to my very first yin yoga class because she said my body and mind was in dire need of help (ya think??) in combatting the physical pain and mental/emotional stress in my life. After much back and forth, I finally agreed after basically begging Ellie to come with me, much like Linus's support blanket. I didn't want to go in alone and look like an idiot without someone who I could look over at and laugh with.

The reason that I knew I would look ridiculous trying to do any type of yoga is because I don't bend.

At all. Think of the Tin Man BEFORE Dorothy has oiled him up. I'm just a little less flexible than that.

My fibromyalgia pain severely limits my movements and flexibility which is in direct contrast to any yoga that I had ever seen. Nevertheless, my doc said this yoga was for people like me so I sucked up my pride, grabbed Ellie (and borrowed one of her yoga mats), and hit the yoga studio one Tuesday morning.

And just to clarify for those not as yoga savvy as myself (snort), my yoga instructor describes her yin yoga class as, "A quiet chance to REST. We will be guided safely through a series of specific postures to increase joint mobility and flexibility, reduce chronic pain and create a sense of peace and well being. There are fewer poses per class. Each pose is held for approximately 3-5 minutes allowing you to gently stretch your deep connective tissue and settle into relaxation. This is a class for healing of many physical conditions and illnesses and deep therapeutic shift in your body and your life. It is the perfect complement to the ”yang” or more active practices like Ashtanga yoga, vinyasa yoga and our active lives."-Penny Kusum, so you can see it's nothing too strenuous.

Unless you're the tin man. Which I repeat, I am.

Honest to God, I was so nervous about the yoga that I had to keep using the bathroom prior to class. I joked with Ellie that she needed to set her intention before starting and then when she threw it back at me I replied with, "My intention is to not crap my pants. Anything else will just be gravy at this point."

And so we began by sitting crosslegged at which point I immediately needed help with a bolster so I could sit up straight yet wouldn't tip over  No. Joke.

We then moved into some "deer" or something like that poses and I needed blocks. Then more blocks. And a blanket.

As I tried to look around without getting caught looking, because you're supposed to keep your eyes on your own mat, I saw everyone, and I'm talking some women much older than me, easily doing these gentle poses. And of course Ellie was like a freakin' pretzel and I could hear her giggling softly as I clumsily and noisily reached for more and more aids to help me in my quest to JUST SIT ON THE FLOOR. As I looked back to my own mat all I could see was what basically amounted to a fortress made of my bolsters, blocks and blankets. You want to talk about feeling stupid and out of place?? Baby, I can tell you some stories!

Then, god love the instructor, I hear her say, "Just because you can easily do yoga poses does not make you a better person."

Well, Here! Here!

But then I hear her say, "Try to soften every part of your body as you relax into the pose." She then lists off all the places to soften "including your face" and it's at this point I realize that I have now put all the effort of trying to hold my pose into my face. I swear to god she must be noticing this and is talking to me. (not too self-conscious, am I?) So I panic and start mentally yelling at myself to relax my face. Relax my face! And the more I try to relax it the more tight it starts to feel. As my face starts to soften (I did it!), I feel my arm start to shake because I have now transferred all of my face stress to my arm. And on and on it goes until the hour is mercifully up and we can leave, yoga mat and pride in hand.

I am proud to say that I kept going back even when Ellie couldn't and even though I feel like a total idiot every time because it really does help. And the instructor is excellent. She's just very calming and non-judgemental, though I kept her real busy trying to help me get into poses in such a way where I wasn't in more pain those first few classes.

These days I know when she tells us what pose we'll be doing next what I'll need to help me achieve it so even though I'm still using all those bolsters and blocks (I've even added more to my fortress since that first class if you can imagine it), I can do it without her making a special effort to come help me.

Of course, brag is a good dog and so with that being said, she told us just last week about getting on our bellies to prepare for the serpent's pose. SERPENT'S POSE?! Are you kidding me?! I haven't been able to lie on my stomach since I was pregnant with Tess and you want me to not only lie on it but then arch up from the floor??

I wanted to tell her, "Hey, how about Snail's Pose" or "Fetal Position Pose"? I'm sure I could manage one of them.

But I just looked up at her and the panic in my eyes must have given me away because she looked right at me and said, "Stay as you are, I'll be over to help you."

I'm not even embarrassed anymore. I was just thankful to know I wasn't going to be trying to be a serpent.

So while everyone struck up off the floor from their bellies, I was on my back with not one, not two, but three bolsters and four blocks supporting my, maaaayybeeee 10 degree curve. Yup. Still not embarrassed.

Just call me the tin man.

Reality Bites...

A week ago yesterday Tess got sick. Very sick.

Like one minute she was good and then...bam!

And naturally this would happen on a day that I was orienting with a new home nurse for her. The poor girl walked through our door at 7am expecting to get Tess up and ready to take to school for the day and instead got a crash course on how to help Tess manage her cough, fever, heart rate and respirations. It wasn't pretty.

We spent the whole day moving Tessie to try to get her to cough because I knew her left lung was filling up. We did many breathing treatments, cough assist airway clearance treatments, and a whole lot of suctioning.

But Tess continued to get worse.  By the time Sheila came to help get Tess to bed for the night I had already called her pediatrician and pulmonologist for advice. Her pediatrician called in an antibiotic for her while warning me that it was most likely too late for it to work, and Sheila worked really hard to help Tess move that god awful junk in her lung. She and I did discuss taking Tess to the ER that evening but, and this makes me really angry, we knew that Tess just wasn't "sick enough" yet and we'd be sent right back home. What they don't understand is that by basically making Tess prove that she is sick enough to be admitted, she will have had just enough time for it to turn into pneumonia.

I was up a lot Monday night to try to help Tess breathe easier. I had hooked her up to oxygen and, by early Tuesday morning, was horrified to see her heart rate in the 150s, oxygen in the low 90s despite being on almost 4 liters of supplemental o2, and her respirations were between 70 and 80 breaths per minute. By 7am, when her nurse for the day got to the house, I had already given Tess her breathing treatments and knew we had to get her to the ER pronto. I quickly showered, packed up Tess's med bags, and called 911 while her nurse kept working on her. (If we had been on the island I honestly believe that they would have life flighted Tess off the island. She was in that much trouble).

Scarborough ambulance arrived within just a few minutes, packed Tess up, and loaded her into the ambulance and confirmed that I wanted to be taken to Maine Medical Center in Portland. I rode in the back with Tess.

The ER nurses, docs and respiratory therapists got busy and had drawn blood and done a chest xray before an hour was up. Her blood work showed an elevated white count and that it was bacterial while her xray showed a total white out of the left lung. She was immediately put on three strong antibiotics that covered everything from community acquired to aspiration pneumonia. During this time poor Tessie just felt miserable. She was also requiring deep suction using a nasal catheter and her oxygen dropped alarmingly at times. I was later told they suspected that her lung had at least partially collapsed.

By this point Charlie had gotten from the island to the hospital and helped soothe Tess while I excused myself to step out of her room for a minute for fear of bursting into tears in front of Tessie. I just couldn't handle seeing her struggle like that. It broke my heart.

After a consult with the pediatricians on call upstairs in the Barbara Bush Children's Hospital wing, it was determined that Tess should go to the PICU rather than the regular floor since she needed a lot more help and attention and basically a nurse ready to help at all times. They did tell me that they felt like, while yes, she was very sick, that she was being placed in PICU for the extra nursing help more than that they felt like was was in need of Intensive Care. Sort of like a mid-level of care. More than the regular floor could provide but not as intensive as the PICU made it sound.

During all of this, while still in the ER, they did an ultrasound of Tess's chest to be sure that she didn't have a pulmonary effusion on top of the pneumonia.  They were very concerned at the fact there was literally no air movement in her left lung. Thankfully, no effusion was found.

Tess did okay her first few days in PICU. Tons of breathing treatments, meds and just top notch care but she was still sicker than I've seen her. In fact, I made a point to tell all of her doctors that very thing. They all kept saying that her xray looked very similar to her xrays from her past two admissions for pneumonia and I kept telling them that, no, this time was very different because the past couple of times Tess was admitted, she was not requiring oxygen, wasn't feverish much, and was just better all the way around symptomatically. This time I needed a freakin' ambulance just to get her safely to the hospital from house which was only a ten minute drive away. I needed them to hear me.

This time was different.

One of the pulmonologists came in to talk about possibly doing a bronchoscopy and bronchial wash to help move all of the mucus plugs out of her lung but was concerned that, since she would need to be intubated for this procedure, and she was so sick, that he may not be able to take her off of the breathing equipment when it was over and thus would weaken her overall condition and we would have to make the decision on possible end of life care. He recommended helping Tess fight this on her own first and if and when the time came that she needed to be placed on a breathing tube due to her not being able to keep fighting on her own, that we would revisit the bronchial wash at that time since we would have nothing to lose at that point.

On day three Tess spiked a fever and just generally looked like crap for a kid who had been on steroids and three antibiotics for three days. It was also the highest her fever had been throughout this whole illness. Not good.

More xrays were ordered asap as well as another chest ultrasound (neither showed any new problems thankfully) which didn't really help us answer why the sudden fever but also let us know that she wasn't physically getting worse. We discussed the possibility of switching to even stronger antibiotics but in the end decided to stay the course to see what Tess would do.

By Friday night she was well enough to be moved to the regular peds floor and by late Saturday was able to be weaned off the oxygen.

She was discharged late yesterday but here's the thing, she is still very sick. As in, I have never seen her discharged from the hospital this sick. Like, I would normally be taking her IN to be seen like this, not home after being treated and discharged.

As scary as it is to think about, this may be her/our new reality. Tess was diagnosed with neuromuscular respiratory failure several years ago and, as her pulmonologist said to me before she was discharged yesterday, Tess is at the age where the disease starts to take hold which could explain why this particular pneumonia hit her so hard and she isn't recovering the same way she has in the past.  Last night was long and she needed some help managing her mucus and oxygen. She is acting scared at times because she can't catch her breath when coughing. Her oxygen and heart rate are still all over the place and she may need more oxygen at home now as part of her norm.

Frankly, it sucks. I'm hoping against hope that she just needs more time to heal up and will bounce back and be back to HER NORMAL baseline soon and that this is a temporary hurdle.

My gut has been saying otherwise. I don't think she's even close to being out of the woods with this pneumonia but god, I'm praying that I'm wrong. There are times she is looking so good and I'm like, Yes! She's kicking it! And then she's back down to low 02 stats and choking on her cough.

And if this does end up being the "new normal", all I can say about that is....

Reality bites.

But I'll leave you with this pic that her nurse took of her today when she looked so good because, dang, this kid is a freakin' Warrior!

Just another day in the life of Rett Syndrome....

I woke up this morning at my usual time of 6-ish, got up and opened the house up for Tess's home health nurse to arrive at 7. When Lindsay got here  we proceeded to go about our usual routine of getting Tess to the side of her bed, one person holding her while the other washed her and put on deoderant, briefs, bra, shirt, pants, etc. Then we transferred her together to her transport wheelchair that we keep upstairs so that Tess could begin her breathing treatment regimen.

I brushed her hair and put on her favorite movie as Lindsay got out the cart of equipment. And I do mean cart. It holds Tess's nebulizer, suction, cough assist, and chest vest.

Lindsay started with the usual xopenex via nebulizer to help open up Tess's airways as I wandered off to get myself somewhat presentable to take Tess to school by 8:30. After the xopenex came the hypertonic saline, again via nebulizer, and last, the dornase via nebulizer. The dornase is a medicine that is given to kids who have cystic fibrosis. Tess does not have CF but her lungs get "gummy" and can develop mucus plugs that lead to pneumonias similar to what happens to the lungs of a child who does have CF. All of this takes about 30 minutes or so.

Next is the cough assist. It's basically a machine that forces Tess to cough in order to move the crap that sits in her lungs by throwing pressured air down into her lungs then forcefully sucking it quickly back out. It's not pretty and it's not fun and Tess hates it. But man, that particular piece of equipment has quite literally been a lifesaver for Tessie. Then she gets 2 puffs from her flovent inhaler.

She gets this every day, twice a day when she is well. We do it 4 times per day when she is sick.

While all this is going on, Lindsay (or myself if I don't have a nurse on any given day) will mix up Tess's anti-seizure meds. 14 pills gets crushed and pushed into her gtube. FOURTEEN. And that's just the morning's dose. She'll get another 6.5 at 2pm and still another 16 at bed time. That's 36.5 anti-seizure pills per day.

Her seizures are not controlled despite all of that.

After her morning breathing treatment today, just as we were finishing up and getting ready to start the process of getting her on the chair lift and then into her real wheelchair that stays downstairs, Tess went into a seizure.

Lindsay called to me and we began timing. This was a big one. Her breathing was affected, her heart rate shot up to 160 beats per minute and she was drenched in sweat. We gave rescue meds at 4 minutes and again at 12. She still continued to seize. She finally stopped at about the 20 minute mark.

Needless to say, Tess spent the rest of the day in bed while I continued to hear heart alarms as she twitched from the after affects of all of those meds that had been pushed into her little body.

Tonight her temperature is slightly elevated and her heart rate is still a little too high for her so now  wait to see if it's all after affects of this morning's seizure or was the seizure actually a sign that something worse is brewing. Time will tell.

I'll also get to spend the rest of the night worrying about SUDEP.

Just take a second to imagine that. And then imagine it happening on a regular basis.

This is one small part of what goes on in the day of the life someone with Rett Syndrome.

This is just part of the reason I am fundraising for Rett Syndrome. No kid should have to go through this, especially considering how close we are to finding a cure.  Please consider donating to Tess's Team Page.  (hover over Tess's Team and it will link you to her page or you can copy and paste the link below into your search bar).  We are grateful for ANY amount you can give. And please consider sharing either this blog post or the link to Tess's Team Page on your own social media accounts! Thank you! :)

http://events.rettsyndrome.org/site/TR/Strollathon/General?team_id=1074&pg=team&fr_id=1114

The Green Envelope On The Fridge...

A couple of week's ago Tess had a check up with her pulmonologist at Maine Medical Center. Knock on wood, the kid has had an amazingly illness free winter in an almost too good to be true fashion. Her doc was very happy with how she was doing, we adjusted some daily breathing treatments, and then things turned pretty serious. 

He asked me if Tess had had the flu vaccine this winter and I replied absolutely, she had it at the beginning of November (which was a little late for her but with moving off the island, we missed the island clinic one).  The doc was happy to hear because, as we all know by now, this year's flu season has been more deadly than most and children like Tessie are hit the hardest. 

I told the doc that I had a huge fear of Tess getting this flu in particular due to everything I'd been hearing about the deadliness of it and then asked if he thought I was overreacting with my fear of it. 

The short answer? No. I was not. 

I then asked the question that haunts my nightmares. If Tess does get this flu, did he think she would survive it. 

The short answer. Again, no. 

ARGH! 

Now before anyone starts to think this guy is a big jerk with no bedside manner, I can assure you he is actually an amazing doctor with a huge heart for these kids and their families. He had even fit us in on a day when he doesn't normally see patients because he wanted to be able to spend an hour and a half with us. Like, he had literally blocked that off in his calendar. He's a good doc and more importantly, a good man. 

What he did say, and which I already knew in my heart, was that the chances of Tess surviving this flu were very slim. Especially since Tess's lungs and body have already been throughs so much so it's just not the same as a healthy child getting it. And, even seemingly healthy kids were dying from it. 

This led to him bringing up the topic of an Advanced Directive for Tess and if we had one. He knew we had met with Maine Medical's Palliative Care nurse a couple of times in the past and had even filled out paperwork called  My Wishes that does deal with end of life care and what that might look like for your child. 

When he asked if Tess was still a full code I very emphatically responded with, "YES!" I want every measure to be used to try to save her if she crashes. 

He looked at me very kindly and asked me gently did I fully understand what that meant? I was confused by the question because, hello! Of course I knew what it meant....CPR, many, many meds, possible life support (temporarily until she gets strong enough to breathe on her own again), etc.

He then asked me if I knew just exactly what CPR entailed. Well, I have watched an awful lot of Grey's Anatomy and have taken several CPR courses so, yeah! Of course I knew.

Except I didn't know. Not really.

CPR would be painful. Chances are they would break her ribs and sternum. They would push cardiac meds. And if they did manage to restart her heart, chances were very good that this would not be an isolated incident. That it was a sign of her body truly wearing down and would happen again. Maybe not that day or week, but also not too far off.  He also said that if they got Tess back, she would most likely need much more help medically speaking than she does now. If Tess ever needs life support due to an illness, that most likely she will never come off of it and would have to live the rest of her life hooked up to a ventilator in order to live. He then added, "And we don't know if we get her back if it's going to be the same girl you know now and in all honesty, I don't think it will be." 

I was just shaking my head no the whole time he was talking. No way in hell was I going to allow anyone to hurt Tessie even if it was because they were trying to save her. Not after everything she's been through and would have gone through to get to that point of needing CPR. I couldn't imagine intentionally inflicting more pain on her. Not on my watch. And the bottom line for me, for us, is Tess has EARNED the right, when her time does come,  to pass away with ease and as much dignity and comfort that we can give her. She deserves it. It would simply be selfish of us to allow anything else. When I told the doctor that I also said that I can't imagine ever signing a DNR on her. It's like saying "I give up" and I will never give up on Tessie. 

He told me there was a form that we could fill out that was a step by step of what we would allow for crisis care for Tess and that we could tailor it to say whatever we wanted.  He felt, given the crazy flu season and Tess's fragile health, that we shouldn't hesitate to get one filled out so that it would be in all of her doctor's computer systems and we would have a copy as well. After that, he set up an appointment for us with Palliative Care again and, after dropping Tessie off at school on Monday morning, we went to fill out that horrible, but necessary, piece of paper. 

Charlie and I have always said that the quality of Tess's life would always be the most important thing. Tessie has a good life. She loves her life. Her family. Oreo. Her school and friends. If she gets so sick that those decisions do need to be made, then Charlie and I have made them together with only that in mind. That Tess deserves whatever is best for her. Not us. If it was up to me, I would say DO EVERYTHING JUST SAVE HER! But that would be selfish. That would be for me, not for Tessie. And that's just not fair. 

In the end Charlie and I opted for a modified Full Code. Do everything you can to save her but no CPR or cardiac meds are to be given. We will  not have her hurt even more during a time when she will already be suffering and needs us to be strong for her. We will have her use breathing support if the doctors believe she has a chance of surviving as well as any and all other meds that could help her but that's where we are drawing the line. At that point it will be up to Tess and God. 

And I pray we have the courage and strength to remember this if and when this terrible time ever comes. 

In the meantime, the Advanced Directive sits in a green envelope that's hanging on our fridge because apparently paramedics are trained to look for them there. As you can imagine, having that staring at you everyday and knowing what's in it brings it's own heartache but I think the bigger heartache would be dishonoring Tess in any way. 

But it also sits next to happy things. Life affirming things like Blake and Bobby's Christmas Card and Ellie's Dean's List paperwork along with, on the other side, an art project of Tessie's. 

So the green envelope's heartache is lessened with daily reminders of the good stuff in life along with the hope and prayers that it will not need to be opened for a long, long, long time. 

. 

You've Come A Long Way, Baby...

When you first truly understand that your child will have major, lifelong disabilities, it is absolutely devastating. There is just no way to sugar coat it. All of the hopes and dreams that you have for your baby are suddenly crushed beneath the weight of words like, Intellectual Disabilities, Global Developmental Delay, Spastic Quadriplegia, Hypsarrhythmia Infantile Spasms (that eventually will change over to Intractable Seizure Disorder) and so many other terms that just break your heart and, for a while, your spirit. There will be anger and fear and so much sadness that you don't know how you will possibly be able to handle this new world. A world you never in a million years thought you would have to live in.

You attend more meetings than you could ever imagine and make friends with therapists, doctors, social workers and counselors because they are the people you now talk to the most in this new world.  You cry and rage and even try to pretend that it's not as bad as it feels like it is because if you admit it really is bad, it feels like you are betraying your child whom you love with all of your heart.

 You will see other babies and toddlers your child's age and silently compare what your child ISN'T doing. It will hurt so badly because it will make you feel even worse and you are so irrational in your grief that you're almost mad at these babies who are developing "normally". And when you notice that feeling you will give yourself a mental slap because WHO DOES THAT?! And what does it say about you that you, even for a nano second, feel like this? You are lost in a storm tossed sea of  emotions. Joy one minute, anger the next, fear the next, and so on and so on until you are sure no one can possibly survive this type of storm. Yet you hear stories every day in your new group of friends of people who, not only are surviving, they're thriving in it. You'll wonder how they ever got to that place and if you ever will.

You may even avoid bringing your child around other kids their own age or, in my case, ask the people closest to me who had kids Tess's age to not tell me all of the new, fun, and exciting things their kids were doing because I just couldn't take it emotionally. And your true friends and family members will not only understand, they'll go out of their way to try to protect you and make you feel okay about it even though you know it's not okay to ask that of them (forever thankful especially to Kris and Ali for protecting me during those years). Then one day, you'll see those same "normally" developing kids alongside your clearly delayed child and your brain won't compare. You won't marvel at the differences. You won't even feel a little bit sad about it. It won't even be a blip on your radar. You'll be able to not only listen to all of the awesome things your close friends and family members kids are doing, you'll WANT to hear them and go out and support them however you can. You will know in your heart that disability is just a word and that your child is just exactly who they are supposed to be in the world and you will marvel at them and what they have taught you.

  And soon enough those days turn into weeks and then years and you will realize you did survive the storm. You learned how to navigate those rough waters and you mastered the art of sailing through them. It wasn't pretty a lot of the time and you didn't come through the storm the same person as when you got caught in it, but that turns out to be a good thing. And you'll feel pride in yourself and the unimaginably hard work it took to get you there.

All of this to say that Tess had another wheelchair fitting this week. I remember pretty vividly the absolute devastation I felt when I first heard the word "wheelchair" in regards to Tess. It felt like I had been sucker punched. Like all the air was just sucked out of me. I didn't want her to look different than the other kids and I most certainly did not want her to have to have a wheelchair.

After I put it off for as long as I could without admitting the real reasons I was putting off to the people who said she needed it, I  ultimately picked out the one that looked the most like a baby carriage (since Tess was still small enough not to need a "real" wheelchair just yet). I hated that chair with a vengeance. Even though it was the least wheelchiar-y looking, it was bulky and ugly and obviously made for a child who had special needs. A wheelchair to me meant no hope of her ever walking. It was a symbol of everything I was grieving as I was trying to grope my way through the loss of the baby I thought I was going to have.

A few years later Tess had grown enough to need another wheelchair. This time the process was much easier. I was years into the Special Needs world at that point and was starting to leave the grief behind most days and only see the good stuff thanks in large part to some really good friends I'd made because of Tessie (shout out to Buh and Kellie!). They came into my life at a time when my faith in God was really being tested and, without judgement or preaching at me, helped bring me closer to God again, and I am so thankful for that.

At any rate,  I picked out a pink chair for Tessie and asked that they embroider her name on the seat back. When the chair came, I still had a pang of, "I can't believe this is my life.", but for the most part, it was just nice to see her in a properly fitted chair. I wasn't happy about it but I wasn't particularly unhappy about it either. More emotionless over the whole thing.

This past week I went into Tessie's new school where I was met with her PT, her teacher, her aide, and the representative from the durable medical equipment company that we use. This visit was actually fun and full of laughs. I was practical in my decisions of what we needed in a chair (it had to be able to roll easily across more than just pavement unlike her current one, and needed the best possible safety features for van transport).

Then I looked at Tessie and told her it was time for her to choose her wheelchair colors. She got to pick the color for the edging on the seat back and bottom as well as the frame. After giving her several color choices my little diva decided to pimp her ride with pink edging and an orange frame. I was cracking up at just the thought of what this thing is going to look like. The representative (who has done ALL of Tess's chairs and has known us since she was 2 or so) looked at me and said, "Please don't put those two colors together! Do you have any idea what this will look like?! Let me just make it all pink for her!". I laughed at him and said, "Nope! Tessie gets to choose what she wants in her ride and that's what she chose so make it happen for her!". He was shaking his head and chuckling as wrapped up the wheelchair fitting and I told Tess to have a good day at school then left and drove home; still chuckling to myself over her color choices.

But here's the real news: I didn't, even for a second, feel bad about this new wheelchair. It didn't even cross my mind to feel sad or mad or any of the other emotions I have felt in the past. I was just proud of Tessie for being so adamant about her color picks. And, I have to admit, control freak that I am, I am pretty proud of myself for not trying to get Tess to change her color choices or, like I would have in years past (and I'm not necessarily proud of this), simply vetoing her choice and getting the colors I wanted.

Yup, I've come a long way, baby!


Side Note: I use the word "you" at the beginning of this post a lot. Obviously the experience of having a child with special needs is different for everyone and I'm not trying to assume that mine is the same as everyone else's though I do think many of us go through a lot of those emotions.

Time to Bloom

Since Tess began school here in Scarborough, her teachers have put her through her paces with what is called "Goal Work". Goal Work is exactly what it sounds like. Tessie works on meeting goals so her teachers can get a feel of where she is at academically.  With help from her new teachers, we rewrote Tess's most recent IEP because there were no academic goals in her old one and the girl is crushing everything her teachers are asking of her as if to say, "Pfft, that's all you've got?!".

And Tess's teachers aren't shy about letting me know how smart Tess is. When it has felt like for so long that you're one of the few people who really knows that, well, I'm here to tell you, it feels pretty dang good. Plus, Tessie is also hearing all of these things said about her and she is so proud of herself that it just about melts your heart to see because people that she wants to work hard for are validating that she is indeed smart. Very smart. She's not just cute and funny and loving and all the nice things that are normally used to describe her.

Nope, what gets talked about the most by her teachers is how smart and clever she is. (They also say the other nice things but, being teachers, focus more on her academics.)

She knows all of her numbers, at least 1-10 by sight, she knows all of her letters by sight, she knows her primary colors by sight, and she knows all of her body parts by sight.

So the next step will be having her work on word recognition (which she has begun to do). For example, one of her goals is to be able to recognize her name when she sees it. They are also working on her being able to recognize the words: Reidy, Mama, Daddy, Blake, Ellie & Oreo. Once those goals are met, new ones for her to be able to recognize functional words will begin. Words like: help, hurt, stop, etc. In other words, Tess will be reading! I'm not sure if she'll ever be able to read more than one word at a time but I have learned not to underestimate this kid so the sky's the limit on where this could take her. Can you even imagine how much bigger her world would be if she could learn to read a book on her Tobii Eye Gaze Device all by herself?! As an avid reader myself, this thought excites me a lot!

She is also wowing them in Speech and PT. As I told my FB friends the other day, Tessie stood INDEPENDENTLY, with no hands on her and nothing used for balance,  during her most recent PT session. It lasted only about 3-5 seconds but she did it! And I think it may be the first time EVER that she has done that. Again, can you imagine your child not being able to stand/walk their whole life without someone giving them nearly total assistance and then one day, bam, they're standing on their own under their own power at fourteen years old?! I don't care if it was for 3 seconds or 3 hours, the kid did it! Of course, when she realized she was doing it her PT said she looked sort of startled as if thinking, "I'm not supposed to be able to do this!", and then buckled her knees.

I get a little thrill every time I think about her standing up by herself and when Ellie and I asked her about it, she was clearly super proud of herself which makes me even happier.

Soon, Tess will start having some of her PT sessions at a pool and she will start horseback riding in the spring. I can't wait to see what she amazes us all with next.

Moving to Scarborough was absolutely one of the hardest and most gut wrenching decisions we have ever made and it's been tough for a lot of reasons, but I can say without hesitation, as far as Tessie goes, it's one of the best things we have ever done for her, not just for her schooling, though that's the reason we moved, but as it turns out, for her own sense of self worth and I can't think of anything more important than that.

There is a saying that goes, "Bloom where you are planted." Well, we're literally watching Tess blossom and it's one of the best things I've ever seen.

Burnin' Down The House...

I have a pretty big fear of fire. I mean, my guess would be that most of us do, but I am so over the top about it that I am half convinced I was burned at the stake in a previous life. But then, on the other hand, is there anything more cozy and cheerful than a merrily crackling fire? It's quite the love/hate relationship that I have with it.

There also was the time I kinda, sorta started a chimney fire in my old house and the fire chief had to tell me to close the doors to the woodstove to shut the air down to it because I had those babies wide open to enjoy the pretty flames. Doh! He then proceeded to come to the house and squirt a fire extinguisher up the chimney for good measure and, while he was at it and much to my acute embarrassment, get a look at my room of horror that used to be the laundry/hoarders room. Good times. Good times.

Then there was last night. Sheila had just left from helping with Tess and Charlie was on the island working, so it was just me (and Tess upstairs in bed) and I decided I was rather hungry and thought a casein, nitrite, nitrate, gluten free all natural hot dog would really hit the spot. Because doesn't that just sound super appetizing?

Anyhoo, I got those little suckers frying and ran out to the garage to make sure it was all locked up so any would be ne'er do wells that might be lurking about could not enter my fortress of safety, when all of a sudden the most piercing, shrill sound filled the air.

Then I heard, between those terrifying ear shattering sirens, "THERE IS A FIRE! GET OUT NOW! THERE IS A FIRE! GET OUT NOW!"

Well holy smokes, batman! As I ran back up the ramp that goes down from the kitchen into the attached garage, my internal monologue vacillated between, "SHUT UP! SHUT UP! SHUT UPPPPPPP!" (at the alarm), and "OH MY GOD, WHAT IF MY HOT DOGS CAUGHT THE STOVE ON FIRE AND THE KITCHEN IS IN FLAMES?!"

I raced in to see smoke filling the house, ran to the stove, only to realize in a very anticlimactic way, that the hotdogs were fine but the  butter that I had used to cook them in was burned and smoking like crazy.

I turned off the gas burner, threw the pan of smoking hotdogs into the sink and raced around trying to figure out how to shut of those mind numbing, screaming alarms.

There were two problems with that plan however.

1) I had no idea where in the house they were all located yet they were ALL going off.
2) Even if I could locate even one of them, I had no idea how to shut it down.

So once I realized that plan was a no go, I moved on to Plan B. Because I'm so good in a crisis and all.

I raced around throwing open the windows and doors, turned on the fans, and prayed my neighbors weren't hearing all of this commotion and calling the fire department.

All I could picture, as those godforsaken alarms kept screaming at me to "GET OUT NOW! THERE IS A FIRE! GET OUT NOW!", was Scarborough Fire and Rescue racing down my very quiet neighborhood and coming to a screeching halt outside my house only to discover that all I was trying to do was cook some hotdogs. Hotdogs that don't even taste like hotdogs.

I still haven't told Charlie about it. He often chides me for "cooking everything on high" and I don't want to even hear about it.

When I ran into Tess's room during all of this commotion to check on her and make sure she wasn't scared, she just looked at me like, "Wow, mom. Wow.", as only a disgusted teenager can look at their parent. I yelled to her over the alarms, "EVERYTHING'S FINE, TOODLE BUG! MAMA JUST BURNED THE BUTTER!" Because I'm sure that despite the smoke, the alarms, and the dog running around in a terrified panic, that my screaming at her as she was trying to fall back to sleep really helped her to relax and feel that sweet inner peace we all crave.

Alas, my friends, the open windows and doors did their magic, the alarms finally ceased and all was well here on Owens Way.

And yes, I did go back to that sink and grab those hotdogs and, as I sat stuffing them into my mouth (because I was rather stressed and I am a stress eater), all I could think was, "These were just so not worth it."

Yet I ate them all.

Writing a new chapter...

Most people know that we have moved to Scarborough in order for Tess to be able to attend a private school that takes only kids with disabilities. Although it may seem very sudden to many of you, this was a decision that has been years in the making.


A long time ago, our hometown school's Special Ed Director, who had just been let go, pulled me into her room one afternoon as I was on my way to pick up Tess. She was packing up her room and had wanted to tell me that I NEEDED to take a class in Special Education Law in order to protect Tess and ensure she would get what she was entitled to under the law. Considering that by that point in time, I had already had ample opportunity to see why she made sure to tell me that, I decided she was right and made it a top priority. I signed up, after getting a waiver from the professor who taught it (because my college prerequisites didn't allow for me to take it without a waiver) and it has been, without a single doubt, one of the best things I have ever done as far as taking care of Tess is concerned. If any parents who are reading this have kids with special needs, I'm telling you, TAKE THE CLASS. Know your, and your child's, rights. I cannot emphasize that enough.

Now for the backstory on how we got here.

While the class was a massive help and I did know Tess's rights (relatively speaking) and fought year in and year out to try to get even her most basic needs and IEP goals met, it just never seemed to happen.  Every year there were promises made to me by the school only to be broken. Then we would start each year from scratch as if none of those previous years promises were ever even discussed. I cannot begin to tell you the stress and frustration of having to go to IEP meetings every year to basically discuss the same things every time and/or be the one looked to to try to create her programming at school. I am her mom. That is way beyond my scope so I asked one of Tess's former therapists, who also happens to be my best friend, to help me write her curriculum. And it still wasn't followed through on by the school.

 Oftentimes, Tess was simply just forgotten about as though she wasn't even a student there. I wouldn't get any notes home, only knew about picture day because of family that had kids there or worked there, and Tess wasn't told about (no notes home)  any of the middle school dances (until last year after I had had to have it written into her legal notices that the school needed to be in better touch with me about things that were going on there). One year Tess was not even mentioned with her class (or anywhere else for that matter) in the school yearbook. It was like she just didn't exist there and I have to tell you, it broke my heart for her. (side note: I didn't then, and don't now, in any way blame the yearbook committee for the oversight. Her classroom teacher should have made sure ALL the names of the kids in that class were given). When I mentioned it to the Superintendent (along with a bunch of other issues that we were having) his reply was, "Well, she missed most of the year because she was sick." I reminded him that no, in fact, she missed a few weeks in October of that year due to illness but that she had had to remain out of school because the nurse was no longer working there and they never tried to hire a new one despite my many attempts at asking them to advertise for the position. 

Then there was the issue of the school rarely being ready for Tess to start at the beginning of almost every year and even if they did have a 1:1 for her, the programming for her wouldn't be ready. So many times it was Tess and her 1:1 wandering the hallways trying to find something to do.  But every year, we would hope and pray that THIS would finally be the year that things at school would be different for Tess. I'd go to the IEP meeting, leave feeling pretty hopeful about everything we had just discussed, only to be left disappointed before the year was done.

These are just a few of the many, many things that we've had to battle for every year for Tess, and this past summer, after finding out Tess was left sitting off to the side of the gym, basically ignored,  as her 1:1 did work on her laptop and the rest of the gym class was dancing and having fun, then learning things that made us realize we had to pull her out for her own safety, we finally said enough. This kid deserves to be treated better.

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

The decision to uproot our whole lives to move to Scarborough was scary and overwhelming and took us a while to fully wrap our heads around but once we'd finally discussed everything with the administration on the island and they agreed that they just could not provide what Tessie needs, there was no looking back. The school agreed that placement at the Morrison Center was best for Tess so we decided to take a leap of faith and jump in with both feet.

I'm not going to lie. It's not easy. We put our houses up for sale in order to help with the financial strain we knew this would bring. One of them is our dream home that took us over twelve years to build, on land that was given to us by my grandparents, and is on the water. But, as parents know, there's nothing you won't sacrifice to give your kids a better life. I'm here alone part of the week because Charlie needs to keep working on the island and we don't have full time nursing yet, so he has to keep coming back here to help with Tess. So yeah, it's hard. Then there's the fact that Tessie is a daddy's girl and misses not being able to see him every day. And it's weird for me to not be seeing Charlie every day. Let's be real here, I've been with the man since I was fifteen years old so this is taking some getting used to on my part as well.

But then we get texts from Tessie's teacher at Morrison and see her great big smile. And we hear her laugh while getting ready for school in the morning as well as when she comes home after school and we ask her about her day. She's honestly the happiest I think I have ever seen her. It's like she feels good about herself, the world around her, and her place in it for the first time in such a long time. Everybody already knows her and calls out to her or comes over to talk with her in the morning when I'm dropping her off and in the afternoon when I'm picking her up. The staff is well trained to work with her and bring out her very best, and that's just what they seem to be doing. Tess is thriving and it makes all the tears, the frustrations, and the sleepless nights worrying if we were doing the right thing for her worth it.

 I want to be sure to say that while I still have some not so great feelings about what has gone in the past with regards to Tess and the school, by placing her at the Morrison Center they are doing right by her now and I am very thankful for it. This was not written to try to make the school or anyone in it look bad, but it would have been very hard to explain such a drastic move without knowing some of  the "whys" of why we made this decision and that it's YEARS and YEARS worth of problems and issues, not just last year. We wanted it to work in our hometown school. We really did try our best to make it work there. And I do believe that the people at school cared about Tess but were simply overwhelmed by her needs, both medical and physical. And the kids, especially her classmates, were incredibly sweet and kind and protective of her.

 I also want to make it clear that I want our hometown school to be a great school and to do well. After all, I've still got a kid in there...she just happens to be a teacher. So despite everything that did/did not happen there with Tessie, I'm rooting for the school because there's also a lot of good people trying to do good things there. 

And finally, I do want to be very clear that Tess's therapists (speech & OT) were incredible with Tess and worked hard to try to help her in any way that they could and I'll always be grateful to them for their patience, good humor and love for Tessie.

Anyway, I digress. Here are some pics and a video taken today, of Tessie at her new school. They make my heart so happy that I could just cry tears of joy for her. This kid is loving her life and feeling pretty good about herself. What more could you want as a parent?

Let the new chapter of our lives begin.  :)

Charlie and Joanna's Excellent Adventure...

Well my friends, we did it!  We made it to Ireland and Tess did not get sick and the plane stayed up in the air and I lost most, but not all, of my fear of flying with nary a Bridesmaids movie moment of, "There's a woman churning butter on the wing of the plane, there's something they're not telling us!", to be had!

Huzzah!

That being said, we wouldn't be us without a few, well, we'll just call them "life lessons", to be had. This is going to be a long one. You've been warned.

Here we go.

We decided to leave for the airport early in order to assure plenty of time to find a place to park the car, find our terminal, get our tickets and get thru security. I still say this was a good idea although perhaps, in our, okay, my, OH MY GOD WE HAVEN'T FLOWN SINCE BEFORE 9-11 AND WHAT IF SECURITY DECIDES TO PULL ME ASIDE! frenzy, we may have left a tad too early. Also, as we were cruising down Rt 1 in Boston we saw a sign that said "Logan Express" and both remarked that it seemed odd that google maps wasn't trying to direct us that way which would clearly be a faster route. I mean for crying out loud, the word "Express" was used and so, totally disgusted with how far behind the times google maps clearly was, we went rogue and veered off down that exit marveling at our astuteness. It took about sixty seconds for us to realize that our "exit" was a side street that could let you off at any number of businesses before joining back up with Rt 1 again. Sort of like a detour that you only needed if you needed to access something along that road. "What a stupid sign! This isn't faster, in fact it takes even longer because now we need to try to get back into the regular flow of traffic on Rt1!", I said in total disgust at Boston's obviously dumb sign making skills. Then Charlie saw it. Logan Express. It was a business where you can pay to park your car and they will shuttle you to the airport and back. Alrighty then. I guess the sign makers of Boston were perhaps not so dumb after all and that, just maybe, I was. Maybe. At any rate, Charlie and I had a quick pro/con debate about just using their services rather than trying to find our way around Logan and decided, literally at the last second, that having someone drop us off right where we'd need to be sounded pretty dang good so we flew in there as cars honked at our last minute decision to go careening off the road without warning. Sheesh! What's their problem anyway? If you're not driving like a lunatic in Boston, then you're not driving in Boston. But I digress. I went inside to inquire and found out that parking there was relatively cheap and so wasn't the bus ticket to take us to Logan so after realizing the bus left only once an hour and was taking off in three minutes, Charlie parked the car and grabbed our luggage while I bought the tickets and we made a mad dash for the bus. See? So much more relaxing than driving into Logan ourselves. *snort*

When we got to the Aer Lingus area I saw a kiosk that Ellie had forewarned me about. I was ready. I strode confidently up to it and got my booking number and proceeded to enter in all the information for both Charlie and myself. Next it asked to see our passports. Ooookkaaayyyy?? So we looked for what would seem like and obvious place to put your passport face down on, placed my passport on it and waited. Nothing happened. I moved the passport around and jiggled and wiggled it to try to get the red light to pick up on it. Still Nothing. I nonchalantly peered over at the guy at the kiosk next to me to see how he was doing it but missed my chance as he was just finishing up. This was starting to take an embarrassing amount of time. Other people were waiting to use the kiosk and even the machine seemed judgy with it's constant, "Do you need more time?" question that kept popping up. So I went back to the wiggle/jiggle method that was clearly never going to work because I wanted to look like I totally knew what I was doing. No problem here, folks. It finally dawned on me that there was another place that perhaps the passport could go. I was sticking mine in the place where the tickets would come out. Yup, I sure was. But in my defense, you need to remember, the last time I flew was in 2001 and a travel agent mailed us our tickets. None of this crazy, new fangled kiosk business. So I finally got thru the whole thing and we were officially checked into our flight. But hold on, not so fast. The dumb kiosk wouldn't print out our tickets. WTF?!?! So it was all for nought and we ended up having to check in at the desk anyway.  I should have known right then that we may need to be a little more on our game.

We got our tickets, went thru security without a hitch and realized we still had three and a half hours before our flight was scheduled to leave. This left an awful lot of time for me to imagine every possible scenario that ended with us going down in a fiery crash. Not good for nerves that were already strung pretty tightly. Thankfully, as soon as I actually got on the plane and in my seat, my nerves all but disappeared. And when the Pilot came on right before take off and said (in a sexy Irish accent no less) a prayer for a safe flight, that just sealed the deal for me and I relaxed. The flight was pretty smooth and before we knew it, we were looking down at the Cliffs of Moher as we were descending into the Shannon Airport.

We got off the plane, grabbed our luggage and made our way to customs. Our customs agent was a chatty fellow with a thick Irish,aka, sexy, accent. He looked at our passports and asked us how many times had we been to Ireland before? When we answered never he exclaimed, "With a name like Reidy this can't be your first time here?!". This would be something we would hear several times. He then told us about driving and gave us a friendly, yet stern, warning, "Stay on the left. Turns are left, exits are left. You go right, there's only two things that will happen; you'll get totaled or arrested. STAY LEFT." Got it.

left you say?

Our first stop was to our hotel, which was only about fifteen minutes from the airport which was a good way to ease into driving on the "wrong" side of the car and road. We knew it would be way to early to check in but we needed a place to plan out our day. Our girls had warned us not to give in to the jet lag but oh. my. god. We'd been up for over twenty four hours by that point and I'm a girl who loves to nap on her best day. God Bless the lady who checked us in because she said that if we came back in a couple of hours, our room would be ready (six hours before check in). So we went to find breakfast and walk around.  Our hotel was an easy walk to shops, a pub, and Bunratty Castle so it was perfect. We toured the Castle then went back to the hotel and napped for a couple of hours. That night we went to a traditional Irish folk dinner and it was a blast! There was Irish dancing, songs, a skit, and a super funny host that kept everything moving along as we were served a three course meal. It was family style seating so our table had seven other places and wouldn't you know it, the other seven people who sat with us were traveling together and were from Massachusetts. I joked that we'd all traveled to Ireland only to meet people that lived two states away. They were a really fun group of people though and, when they heard our next day would include the Cliffs of Moher, kept quoting from The Princess Bride. Loved it.

Traditional Irish Dancing

The final course of the evening was bread and each table had one piece of bread that had a gold ring hidden in it and that, as the story goes, the ring would be found by the most deserving person. Because of my stupid Paleo diet, I couldn't eat the bread but by god I wanted that ring. Charlie and I were on the far inside of the table so it was passed down to us almost last. Now, I saw that ring in the  bread almost as soon as it hit the table and I watched with bated breath as each person got their bread and didn't realize that the ring was in a different slice. Then it was Charlie's turn and he didn't see it either and almost took a different piece of bread. Well, no way was I going to let that happen! "No, get the other piece!" I whispered in his ear frantically. He looked at me like he does when he's confused by me and I whispered "RING!" I want that ring and it's in the other piece of bread!".  So he grabbed the other piece, gave me the ring, and I sat back and basked in my victory. Then the discussion turned to "who got the ring? Did anybody?". So I proudly held it up and said that I had found it. Which was the truth. Mostly. And I do feel like I deserved it the most but only because nobody else even really cared about it and I did. Not sure what that says about me and I don't really care because I got the ring. And that's what counts here.

As we all got up to leave at the end of the evening the last thing we heard from our new friends was, "Have fun storming the castle!".  Ah, one last Princess Bride quote. Just the perfect way to end the night.

So day two began with Charlie telling me it was my turn to drive. My response was swift and unequivocal. "Trip's over then." I informed him that there was no way on God's green earth that I was going to drive in a country where the speed limit was one thousand miles an hour on roads that were clearly built for a horse and buggy. Also, my eyes were just refusing to send the proper signals to my brain about the whole "wrong side of the road thing." I just couldn't adjust visually to it.

Since we really didn't want to end our trip on the second morning, Charlie hopped into the driver's seat and we made our way to the Cliffs of Moher. What can I say about that except they're all you would imagine them to be and then some. Absolutely gorgeous. And we met this sweet older couple who were from Ireland but traveled all over the world. We chatted with them for a bit, sat and enjoyed the view for a while and then headed back to, what I will now always think of, as as the death mobile also known as our car.

Cliffs of Moher

Friends, I'm here to tell you, driving in Ireland is no joke. And driving on the Wild Atlantic Highway, especially from the Cliffs of Moher, is a ride from hell that will forever leave me with a cold shiver when talking about. The size of the  roads are what I would imagine the roads in a Barbie dream world would be like. Tiny. There is barely enough room for two cars to pass each other and there are tour buses that come out of nowhere that careen toward you at death defying speeds and angles. Also, there were constant warning signs about slowing down for bends in the roads and the visual aid on these signs to show you the bends were, in many case, an N or a Z. And they were accurate. Those "bends" were angles that seem like they'd make really good problems in geometry books but not for cars (and don't forget about those tour buses) to navigate. And you need to stay left! As we came out of one road that joined up with another one along our long and winding path down from the Cliffs, I totally and completely lost my shizzle. Like white coats, straight jackets and padded room lost it.

Charlie pulled out and I screamed in a voice I didn't even recognize, "LEFT! GET LEFT! CHARLIE!!!! LEFT!!!". You know when someone has lost it so incredibly badly that you think that you absolutely must be doing something wrong? Well that was Charlie. He swerved to the other side of the road only to realize that he ALREADY WAS IN THE LEFT LANE which meant he was now in the wrong lane, and a tour bus was hurtling right towards us at breakneck speed. I sucked in my breath as Charlie quickly swung back over to our side of the road. Then he totally lost it. On me. And while he was completely justified in doing so, I mean, I had almost gotten us killed in my weird panic moment, I decided that he was being mean so I got offended and proceeded to act like a sulky teenager.  Also because I felt stupid, and rather than feel stupid and mad at myself, much better to feel mad at him.  Because I'm a grown up. It took a few hours but we were finally able to laugh about it. Somewhat hysterically but laugh nevertheless. And I will say that my "moment" had officially ended Charlie trying to get me to drive in Ireland considering I couldn't even really make it as a passenger.

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

From the Cliffs of Moher we made our way to Galway which is a pretty little town. We ate dinner in an Irish pub with live traditional Irish music. We toured the Galway Cathedral and strolled Shop Street and Quay Street and saw the Spanish Arch. Then it was back to out hotel for the night. This hotel was such a Griswold hotel. We could barely find it on the street (never a good sign). Flights of crappy stairs up to reception and another flight up to our room. The door opens and there is literally just a bed, tv that didn't work, and bathroom. That's it. No place to sit. No closet or mirror. No place for luggage. You literally couldn't open your luggage and walk by the bed at the same time. Also, the head of the bed slanted down at a weird angle. In the morning I opened the bathroom door only to hit Charlie with it, because in order to not be hit by it, you had to be on the bed and he was getting dressed at the foot of it. Then I plugged my blowdryer that I had brought from home (I hadn't needed to use it up until this point because the other hotels provided them)  into the outlet converter that we had brought with us. I turned it to high and was a few seconds into the drying process when I heard a super loud whine coming from the motor. I turned it so where the air comes out was facing me and it gave one last extra loud whine, the coils turned a dangerous red, smoke snaked out and it just quit. Poor thing never stood a chance. It was so hot that as we were leaving the room we decided the only safe place to put it was in the sink just in case it actually started to burn. Besides, I'm not sure there was even a trash can it could have gone in. We were pretty happy to say good bye to that place.

On to our next days adventure! The Aran Islands. We made it safely to the ferry that would take us out to Inis Meain only to discover that the ferry ran two times a day and we had just missed the ten thirty one and the next one wasn't scheduled to leave until six thirty. How's that for irony? Two people whose whole lives revolve around a ferry schedule, never gave it a second thought that, oh, I don't know, other ferries might also have schedules. I'm telling you, the Griswolds really have nothing on us.  So we needed to kill about seven hours and didn't have a clue what to do. One of the ferry parking attendants took pity on us and gave us a map and routed out the Ring of Kerry drive for us and told us we had time and it would be worth it. Off we went. Well, sort of. We made it to part of the Ring of Kerry. At least we're pretty sure we did. But we ended up going down some side road and drove thru what we think was a National Park. Because of course. Only we would veer off one of the most famous driving routes in the world only to get lost ramming around some mountainside park and in the end, never actually see the whole Ring of Kerry and not even be sure of what is was we did see. #Griswoldsstrikeagain

After finding our way back to the main road and stopping for lunch and some souvenir shopping (my most favorite thing ever!), we made it back to the ferry and got ready to board. It was a relatively small boat that took only passengers, no cars. I was expecting a quaint little ten minute ride and what I got instead was one of the rougher ferry rides I've ever had. Forty-five minutes of pure torture. And anyone who knows me knows that this girls doesn't do rough ferry rides. So, yay! Go me! We made it to the island and got a shared taxi to our B&B where we had dinner and then walked around for a while. Again, seriously beautiful scenery.

By the next morning the wind was blowing even harder (awesome), and the ferry was late (never a good sign) so I was a tad nervous when we boarded for our ride back to the mainland. And I should have been. Rough? Oh yeah. But here's the kicker, I'm used to captains (hi Bub!) who try to make passenger comfort a priority. Not here, baby. It was full freakin' steam ahead and waves be damned! There was one wave where the captain decided he'd better slack back on the throttle but, unlike here where you take the wave and wait a beat before throttling ahead, he slacked back for about five seconds and was like, let's go boys! Full throttle and yee haw!  And the best part? They were so casual about it all that people were actually allowed to smoke out on the deck and they were selling beer, coffee and snacks! It was like being in some weird parallel universe! So the boat is rocking and rolling and shuddering on the bigger wave hits and people are like, "Seems like a good time for a beer and a smoke.", while I'm staring wild eyed out of the window literally praying that God makes the next wave smaller pretty please! And what's Charlie doing you ask? He's just sitting there laughing at it all. My near hysteria and frantic grabbing on to him while sucking in my breath from fear, the smoke wafting in, the waves beating against the boat. Oh yeah, he thinks it's all just a regular comedy fest.  Good times. Good times.

All the no's to this ferry ride

The rest of the trip was relatively uneventful by comparison. We saw the Blarney Castle and Gardens and Charlie kissed the Blarney Stone. We went to Killarney and had a carriage ride thru the park there. By our last night we were beat and went to bed early for an early morning drive to the airport. We very happily handed back the keys to the death mobile, went thru security and customs and once again realized we were about three hours early. What can we say? You just can't teach old dogs new tricks. But you can make them realize that there's time to hit the duty free shop for some last minute souvenir shopping.

Charlie kissing the Blarney Stone

The flight home was long but uneventful and we finally made it to Sheila's house to get Tess late Sunday afternoon. I made a beeline for Tess and she very firmly let me know, in no uncertain terms, that she was pissed with me. She refused to look at me or even acknowledge me for that matter. Whenever I spoke she would roll her eyes and then look away. She kept this up for nearly two hours. I finally put her movie on the ipad and crawled into bed with her at the hotel and she gave in and smiled for me and seemed happy to see me and willing to forgive and forget.

She smiled at her father right away. Punk.

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



sláinte!

Traveling WITHOUT Tessie Toodles...

My FB friends know that for Christmas our kids along with their boyfriends, a family friend who was once Tess's most beloved (and still is beloved) home health nurse, my dad and my stepmom surprised us with one of the most thoughtful and loving gift's we could have ever dreamt of. Or, in our case, not really dared to ever dream of due to the extreme circumstances that we live under.

They gave us a trip to Ireland!

When we opened up the box and I saw the little booklet that Blake had made sitting on the top of traveling goodies, with the cover that read, "You're going to Ireland!", I just started bawling. And my friends, I am NOT a crier. But I just couldn't help it. Charlie and I, who never even get to go out alone together, for even an hour, ever, were going to get to go on an actual REAL vacation.

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

TOGETHER. ALONE.

It was seriously almost beyond anything that I could comprehend. It was just so unimaginable. As I said before, it's something we never even dared to dream about doing simply because our lives completely revolve around caring for Tessie and that is a full on twenty four hours a day, seven days a week, job. And because Tess cannot even be left with family members due to all of her medical needs and the fact that she can get scary sick as quick as you can flip a light switch, we just figured that any type of trip together wasn't in our cards and we'd made peace with that. Well, let's be honest, as much peace as you can make in that kind of situation.

But here we sat, with our amazing, kind, generous, awesome girls looking on with hope in their eyes and voices as they asked, "Are you going to go?", because they were so excited FOR US to be able to go but they also understood that leaving Tess for that amount of time, not to mention, not even being in the same country as her, might be a deal breaker, especially for me.

To paraphrase the scene from the movie, The Princess Bride (which has the Cliffs of Insanity in it, which in real life are the Cliffs of Moher, which WE ARE GOING TO BE SEEING IN A LITTLE MORE THAN A WEEK), "...only a great fool would turn down the trip of a lifetime, but I am not a great fool so I choose yes, we want to go to Ireland."

And I cried a little more out of sheer happiness and because our kids had planned this all themselves and worked every angle to make it happen. Not many kids would do so much for their parents with nothing in it for themselves. They were even the ones who had called Sheila (our former nurse) unbeknownst to me to be sure she would be willing to take Tess so we could go. And because Sheila is just the absolute best and loves Tessie, she is taking her vacation time to come stay with Tess along with her boyfriend, Jim, who is also kind and generous and making it a priority to be here to help Sheila.

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

So we are one week away from the day we leave the island and my anxiety is starting to ratchet up pretty high. I'm scared to leave Tess. All of the what ifs that I live with daily with her are rearing their ugly heads. I'm most scared of SUDEP (sudden unexpected death in epilepsy). I hate the thought of her having a bad seizure and me not being there but, even worse, the fear that that could be the seizure that causes SUDEP and I'm not there. She will be left in the best hands possible next to me (and truth be told, medically speaking, better than me) but that fear is just too big to be able to be reasoned with. For example, I make sure I tell her that I love her every single night at bedtime (even though I tell her this approximately eleventy billion times  day) because my fear is that she will die in her sleep from SUDEP and I need to know that the last thing she hears if that should happen is how very, very much she is loved. And if for some reason I forget to tell her that (because there are a lot of steps to putting her to bed), I go back in if I hear her wake up at all to tell her. So yeah, I'm getting anxious about leaving her.

And the cherry on top of that sucky sundae? I am afraid of flying and have claustrophobia and the thought of feeling like I'm trapped in that airplane for six hours is wreaking havoc on my nerves. I know, I know, I'm a baby. I'm not disagreeing with you. But in my defense, it's a freaking metal can, with wings, way up high. That I can't just take a break from when I want one.  Meanwhile, Charlie has absolutely no fear of flying and Blake and Ellie don't have any fears about it so I'm over here like the freak who's all, "I wish they would just have parachutes on the back of every seat. That would make me feel better." Because that would be safe. *rolls eyes at own ridiculousness*

If you have a fear of flying, or any other fear based thing that you know in your head is completely irrational, I know you can sympathize with me,  and if you don't, well, what can I say? Being irrational comes fairly easily to me.

At any rate, I'm putting my big girl panties on, telling all of my fears to take a back seat and shut the heck up, and getting on that airplane come hell or high water.

Because Ireland.

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

And, God willing and the creak don't rise, I'll be home the following week to get the cold shoulder from the Toodle Bug for having the gall to leave her and bragging rights on getting to check off a major item on my bucket list as well as the honeymoon we never got.

I told Ellie I was going to occupy myself by looking for celebrities. She wasn't very supportive of this idea as she scoffed, "Celebrities in Ireland, mom?" And I said very haughtily, "No, Ell, celebrities on the airplane!" After all, aren't most celebs winging their way to Ireland while flying coach? I see no flaws in my plan at all. And, If I'm a really good girl on the flight, maybe the stewardess will give me a set of airplane wings to pin on my shirt. But if I'm being totally honest here, I keep seeing myself as Kristen Wiig from the movie Bridesmaids when she's on the plane and having a total freakout. It really could go either way at this point.

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

Sweet Surprise...

It's been only a little less than two months since we found out that Tessie Toodles has Rett Syndrome and to be perfectly honest, I've been good with the diagnosis and I've been struggling with the diagnosis.

I explained why I was good with it in my last blog post and I feel just as strongly today as I did when I wrote about it. Even more so since taking Tess to the Rett Clinic at Boston Children's Hospital and going over her whole life's history yet again, only this time with a Rett Specialist. He had asked a genetic counselor to join us to better explain how and why this had happened to Tess and by the end the only really big question I had, other than double checking that Blake and Ellie were at no higher risk of  a baby being born with a birth defect than anyone else as well as making sure this wasn't anything that could have been prevented (they're not and it's not), I came back to the question of HOW WAS THIS MISSED?

You see, in many cases young girls are often diagnosed with Rett Syndrome even with a negative genetic test result because they clinically present has having the symptoms of Rett Syndrome. Tess had nearly every symptom to the point where the geneticists were testing for Rett yet never considered it again once the test came back negative. No neurologists caught it, no geneticists (and mind you, this was at one of the world's best children's hospitals), and no other doctors caught it either. Tess just remained a mystery to us all.

Which brings me back to the HOW WAS THIS MISSED question. Neither the neurologist nor the genetic counselor could answer it and to be honest, were a bit baffled that Tess had gone this long without someone diagnosing her with Rett. So you see, I stand by my last post because by all accounts, Tess should have been diagnosed years ago but I was spared that until I was much better equipped to handle it. And I am forever grateful for the gift of not knowing until now.

Yet I am having my moments where I'm struggling with this diagnosis. The "Why my kid?", moments. Plus I've been doing a lot of reading and learning about Rett Syndrome and it's such a brutal disease. It really brings into sharp focus how much damage Rett has done to Tess's body and how very hard she works just to simply exist. I'm reading things that make me overwhelmingly sad for Tess but at the same time,  even more proud of her and her warrior spirit than I already was.

While at the Rett Clinic, the genetic counselor showed us a picture of what Tess's specific mutation looks like. Basically, we saw the exact spot of where it all went wrong. The coding her DNA took out and replaced with other stuff that was wrong. And for some reason, seeing it like that, how close she was to perfectly healthy except for this little blip of broken coding, well, honestly, I just wanted to burst into tears. It all came rushing at me. The years of fear, anxiety, fighting with schools, doctors, insurance companies to make sure she gets what she needs, surgeries, skills not gained, therapies, hospitals. So much damage from such a small error in her coding. And the thing with Rett Syndrome that really broke my heart was reading that the girls KNOW what they want/need to do but their bodies just can't do it and often, the harder they try to get their bodies to do something, the harder it becomes.

As I said, brutal. I mean, think about the last time you had an itch in a hard place to scratch and how bothersome that was. Now imagine that same struggle for every single thing in your life from wanting to scratch an itch to grab a toy to pet your dog to eating to talking. You KNOW what you want to do but your body simply can't. I can't begin to imagine the frustration, anger and even fear that would make anyone feel. You can't slap the mosquito that's biting you but you can feel the bite. You can't scratch but you can feel the itch. You can't stretch but you feel the cramp. You want to play with the toy but can't make your hand grab it. And this doesn't even take into account uncontrolled seizures, pneumonias, scoliosis, etc, etc, etc.

If I think too much like this I end up feeling super sad for Tess and that does no good to anyone, least of all Tessie.  She's happy and she's not to be pitied. Tessie loves her life. Is there suffering in it? You better believe it. But this kid just keeps smiling and laughing and facing each day, each moment, with a spirit that is to be envied not felt bad for and she keeps reminding me of that with each sassy little smirk or giggle.

I've also had a tough couple of weeks emotionally because we've had to make the very difficult decision to pull Tess out of school due to some issues we've had there and that has been upsetting. She also has the eighth grade send off tomorrow and I'm kind of dreading it. Tess's school day looks much, much different than the other kids and she really spends very little time in middle school so the "send off" doesn't begin to hold the same meaning for her, but I think it's important for her to participate in this with her classmates and thankfully, Ellie has offered to help Tess so that she can be a part of it.  At the same time, it's a visual reminder of just another thing that Rett has robbed from Tess.

But, as the saying goes, there's always good in every day if you take the time to look for it and in today's mail I got a gift from a Travels with Tessie follower. Ellie laughed and jokingly said, "Your first fan mail, mom!"  It was a pretty little cuff bracelet with the words, "though she be but little, she is fierce" stamped into it as well as a very kind and encouraging note. It really lifted my spirits just when I needed it, so Gigi, if you happen to read this post, I'm sending you a great big THANK YOU for the super sweet surprise that couldn't have arrived at a better time. And please tell Mr. K "hello" from me and that I said "Federalism" (he'll get the admittedly very old, joke).  :)