Thank You!


Over the past couple of weeks, in order to prepare for the upcoming meetings / appointments that I mentioned in my last post, I had to give myself the specific task of organizing Claire’s medical files.  I’ve been putting this effort off for a little over a year now, but I knew the time had come to get myself back on track and organized so I could easily find whatever documents I may have needed to reference with these appointments.  It took me a few days to go through everything.  But in the process of doing so, I came across old notes from 2011 specifically, that helped me remember where we were when we first started out on this journey.

My very first notes on Rett were taken the next morning after having had received the news of Claire’s confirmed diagnosis.  My sister graciously took all three kids for a few hours, so Sean and I could go to the library to talk in a quiet study room and research.  What is Rett?  What in the world do we do now?  One question most definitely led into the next.  After talking for a while together and looking things up online, Sean stayed in the room to gather his own thoughts, and I started wandering around the library, looking for books to reference on Rett.  As silly as it sounds, I remember feeling totally lost as I scanned the library, looking for a book on Rett.   I found nothing.  However, what happened next really summarizes the type of journey we’ve been on so far with Rett.  There’s that old saying “the apple doesn’t fall from the tree.”  Well, it’s true.  How funny it was, that as I was searching the library looking for a book on Rett, at that very time, there was another woman who was also doing the very exact thing, at this exact location, at the same time.  Who?  My mom.  🙂

It was day one, technically “living with Rett” and it was apparent we weren’t alone, trying to research this new topic.  How ironic was it that I found my mom at the library doing the very same thing as me.

As I organized Claire’s medical files, I also re-read a few binders that I’ve gathered through the years…  these are labeled “support.”  These binders contain hand written letters, printed out emails, prayer cards, and other forms of support that we’ve received so graciously from others since Claire was diagnosed.  I am not kidding you when I tell you I’ve saved everything.   Why?  Because when I feel Rett is taking over in general, and bringing me down, I pull these binders out, look through them, and smile.  Claire has given us (all) an opportunity to see how GOOD people are.  How GOOD people come together during specific times.  How amazing a little girl like her can help teach all of us different things, in different ways.   I’m saying this as not only her mother, but from someone who is the recipient of emails or letters, or Facebook messages, etc…  as a person who (thanks to you) is reminded of this often.

Going through the exercise of organizing Claire’s medical binders and paperwork in general was a task I most definitely ended up enjoying.  As I reflected back on the moment I had with my mom in the library, to going through the support binders, to reviewing her medical records in general, I realized how far we’d come from June 2011 to now.  Both on a personal level but also in general with understanding the world of special needs and Rett specifically.  As I reread the letters, emails, and other items in our support binder, I was reminded again HOW we were able to come so far over the almost three year time span.  The answer?  The amount of prayers, love, support, encouragement, and advice/ help that we’ve received over the almost three years of this journey, from our friends, families, acquaintances, and strangers, has been overwhelmingly present.  And because of this… because of YOU… we are able to keep hoping, keep fighting, keep learning, keep growing… and keep going.

Your prayers are working.  Please see for yourself… These two videos were taken the other day.  🙂  Claire received her 2nd round of botox about a month ago, and that has really helped loosen up her leg muscles.  But to see her move around like this, to see her be able to better coordinate her overall movements with such intent… WOW.

In closing, thank you, thank you, thank you, and THANK YOU!  🙂   🙂

… and, Happy St. Patrick’s Day, from this family to yours!

– Colleen

So Close, But So Far Away

Tonight as I tucked Claire into bed, I noticed she had something important on her mind that she wanted to share.  Her Tobii communication device was downstairs charging for the next day, so at this moment, it was just us two, no communication devices, no technology.  Just us.  Claire was staring at her three favorite stuffed animals.  She wasn’t lying down, but rather upright, looking at them, and making “mmm” sounds.  I knew from that moment we needed to chat!

So I got into bed with them all, and said “What’s going on with your friends?”  She looks at me, and smiles.  (This is her telling me she feels understood)  So I get comfy.  I tell her, “Okay!  You need to tell me what you guys are talking about… fill me in!”   Again, she looks at me and smiles.

There are many moments like these where she looks right in my eyes, for a long moment.  Sometimes for a few seconds, sometimes up to a minute.  This is when I make sure to be quiet and listen.   I smile back.  In between the looks, I tell her “Claire, you really have a lot to say right now.”  She smiles back.  Again, feeling understood.  And I continue:  “I know, Claire.  I totally agree with what you are saying.  Tell me more.  Yes!  I know.”  And she smiles yet again, looking me deeper in the eyes.

At that moment, I felt so incredible close to her.  We were inches apart, and we were connecting.  And it was the best moment ever.  And yet, here we were, only inches apart, and as I looked into her eyes, deep down, I felt so far away.  What I’d give to truly know what she was thinking during this moment when she was staring me in the eyes with that look on her face, which said “Mom… do you know what I mean?  I want to tell you so much.  Please tell me you understand.”

Awee, Rett.  How much I dislike you.  Seriously, why?!   I just want to hear my baby’s voice.  Please, one day??  But recently, her health?    Come on.   I knew from the beginning how all  x, y, and z were possible with Rett.  But now, darn it… they are coming true.  No!  I’m not ready yet.   Prayers are welcome in these upcoming next two weeks.  My stress level is honestly through the roof at the moment.  As I mentioned in my previous post, Claire’s health has been poor this winter.  Now, we are facing the possibility that she’s aspirating on food and liquids, which means instead of her food and liquids going to her stomach, they are going to her lungs, causing her to choke/ cough and consistently vomit among other issues.  On Tuesday, she will have her 4th swallow study done.   We are also suspecting GERD among other GI issues, and she’ll be seen next week for that.  I don’t even want to get into what this could mean if she truly is aspirating because honestly I’m not there yet to think along the lines of her being fed through a tube. But, I’m not going to lie… when the pediatrician called me on Friday and asked me if I truly understood everything that was going on and what this could mean (which I do understand), it became more real.  It’s just weird hearing it from someone else.  No!

We will do whatever we need to do for Claire, for her safety and health. Prayers please though, for a good outcome with these upcoming doctors appointments.  She also needs to see pulmonary for possible reactive airway disorder.  And should we get back to the sleep specialist for possible sleep apnea, or obstruction of the airway when sleeping?  (am I even saying these medical things correctly?)  Yes… all of these things are now on the radar.  Not uncommon with Rett.  But new to us to some degree.

The focus of the next two weeks are not only on Claire’s current medical issues, but it’s also on Claire’s school program.    We have a couple meetings with the person in charge of the school program, along with the entire team of teachers and therapists at school this week and next.  I haven’t said much on the topic of her school year thus far, nor will I, in this format.  However, now that we almost have a year under our belt with the program, I understand a lot more than I did in the beginning and I’m comfortable in determining if this is the right fit.  There are current challenges and gaps that need to be figured out and closed at the moment.  I’m hoping we can come up with a great solution in the next couple of weeks together, so that next year will be smoother on both ends.

Finally, on Thursday this week, we have a meeting with our case manager to discuss Claire’s updated health and progress (or lack thereof), among other topics.  This meeting should be fine… there’s just a lot of prep work this time around in particular.

All of this “Claire health/school/case manager stuff” is in addition to regularly attending her therapies, trying to bring them in the home for consistency sake, keeping up with the kids’ school stuff, the boys’ homework, their sports practices and games, the kids’ playdates, and our normal  ‘life’  with family and friends.  We are constantly on the go, go and go…  and things need to slow down, down and down.  But right now, it can’t.  So yes…

Prayers for a good health report, successful outcome on the school front, smooth meetings with the case manager/ insurances, and peace among the homefront so my kids don’t sense the stress level or miss a homework assignment because my mind is so far away at the moment, would be much appreciated.  🙂

On a side note? (and yes, totally random point)  My boys love when I volunteer at their school as a library or computer helper.  They are so darn cute when I’m there and they are so happy to tell their friends “that’s my mom!”  I know this won’t last forever.  So on Tuesday, before Claire’s swallow study, I’ll be Brendan’s “computer mom helper” and he already told me how happy he was about this.  Hearing this is priceless.  Being there is even better!

You know…  so close but so far away?  Some moments you may feel like you have a good handle on things… you are in control and things are manageable.  Other times, you may feel the total opposite.  And… in a blink of an eye, these moments can be interchangeable.  That’s just the way it goes.

So, although I’m still searching on how to process and “do”, especially during these busier times, I’ve also just learned to go with it and ride the ride.  (And send extra thanks to those people who are patient with me when my getting back to you response time may be a little longer than what it used to be… or if I just completely forget… so sorry!)  😦

God has a plan for all of us, this I mentioned before.  But does that mean we can’t ask for extra prayers at the times where stress may be a bit heavier and we are hoping for good test results or IEP answers, among just keeping the “norm” on the home front?   I don’t think so.   🙂