Going on week three for the ‘themed activities.’  Here’s a quick recap, followed by some video of Claire herself in the midst of the action.

We went with a St. Patrick’s Day theme for week one.  It started off a bit shaky.  I wasn’t sure if she was really into this… especially when I told her ‘no electronics’ and we were going to do some other work.  Slowly though, she warmed up to this idea.  And just as she was warming up to everything, I ended up getting sick, which put things on hold for a little bit.  Claire’s physical therapist, Amanda, helped remind me though that it was okay if the “theme” lingered on for more than one week.  Thank you, Amanda!!  You are very right — life gets in the way (but hearing this also made me relax a bit when we approached the second week and I did not have anything new planned.)   Setting the expectations of having a new theme each week is great in perfect land.  But we don’t live in perfect land, and as I type this, there’s a sink full of dirty dishes, and my goodness, the laundry is overflowing, along with emails and phone calls unanswered, piles of stuff to put away in each room, etc.   But today, Claire and I had a great day, I made a great dinner (why great? Everyone loved it… I’m considering this a win, as it’s not often this happens) and I had some wonderful quality time with the boys when they got home from school.  In perfect land, I can wear all of the necessary hats in a given day and wear them well.  In Reilly reality land, if it takes me a couple weeks (instead of one week) to accomplish a “themed activity” or any activity or project for that matter, I’ve learned to be okay with this, as there is only so much time in a day.

So back to the themes….  we stuck with the St. Patrick’s Day theme for two weeks.  This week, we are focusing on Easter.  Here’s a video (and some pictures) of what we’ve done so far.  It may be tough to see as you look in from the outside, but below are some examples of what (and why) I chose these activities.

Hoppy Easter Eggs

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The Easter Egg hunt, and the other activities accomplished the following:

1. Physical Therapy – Claire worked on her motor planning and walking skills.  She often knows where she wants to go, but telling her brain how to get there and actually doing it is challenging for her.

2. Each Easter Egg was filled with cheerios because I wanted to incorporate part of her breakfast.  We filled up six eggs, and we got that number from a “Spot Easter Egg Hunt” book we decided to model.  I added an extra egg filled with jelly beans though.  Jelly beans for breakfast too?  Why not.  Added silliness is a bonus.

3. Occupational therapy – She used her ‘fanny pack’ to help gather the eggs since she cannot hold a basket.  We then practiced hand over hand so she could put each egg in her pack.  Later in the video, you’ll see her practicing her OT by attempting to feed herself cheerios.  This is often times hit or miss… but practice is important so she doesn’t lose this skill moreso than she already has.  Finally – we put Easter/Spring objects into her sensory bin, and we played with that.

4. Music – We incorporated a funny bunny song, and she loved this.

5. Math – We counted the eggs, and sorted the cheerios from the jelly beans.

6. Colors – We described each color… followed by her watching a Baby Einstein video on colors.

7. Pretend play – She dressed up as a bunny.   We also pretended she was Spot, gathering his eggs.

8. Art – She colored an Easter Egg, and additional Spring coloring book pages, and decorated each one with Spring stickers.  I helped her by doing this activity hand over hand (OT), and we listened to a few more Easter songs at the same time.  We “puuuushed” the stickers onto the pages, using her left hand, since she’s lost ALL movement in her left hand – any attempt to try and get this back is worth the practice.

9. Speech – I’ve recently learned the Boardmaker software program (I love it!), and therefore was able to customize and print out a “play page” for her.  (see picture)  I also used the iPad to customize other activity boards, where she chose the next activity, and we would go from there…

I am liking these themed activities.  They help me organize my days, activities, therapy homework and thoughts.  There’s a little bit of preparation that goes into each theme, for sure…. but it’s fun.  The boys are really enjoying this as well.  They get excited to join in and that makes everyone, especially me, happy because they are all enjoying an activity together.  Win win, for all.  Happy Easter!!

One month from today, our little girl will be turning 3.  Yes, 3.  Turning 3 may not seem like a huge deal, but to us, it is.  Why?  It’s because we are now experiencing the reality of a word that before, was just a very distant thought.  We are becoming familiar with a word that has the tendency to create cynicism even among the most optimistic people.  What is this word?  IEP, also known as Individualized Education Program.  I cannot help myself from posting this funny picture below.  Obviously, nobody would put hot sauce on crayons, but it does give you the idea of how IEPs are viewed at times.

Claire will soon be going to school and we will be working with the school to agree on an IEP for her.  It may sound simple, but as we are going through this process, I’m finding that this is everything but simple.  Claire’s IEP will need to be very detailed given her challenges.   We’ve had multiple meetings with the school to discuss Claire thus far, and these haven’t been easy.  She was evaluated by the physical therapist, speech therapist, occupational therapist, school psychologist, augmentative communication expert, and the vision specialist.  They all seem like a great group of professionals.  In fact, after talking with different parents of the school, I am told how happy they are with their decision to send their child, and furthermore, how well their child has progressed since starting.  That gives me hope.  However, my concerns are still there.

First of all, it’s hard sending Claire off into the world, knowing she can’t talk and tell me about her day or if something went wrong.  She can’t use her hands for any type of movements.  She can’t sit on the concrete floor without something behind her because she’ll throw herself backward if frustrated or bored.  She cannot walk independently, sit on a bike, or attempt to go on a swing or a slide.  I know I shouldn’t have compared her to other kids when she was getting evaluated, but I did, because it was right in front of me.  I couldn’t help but notice that they were so much more independent than Claire.  I worry that she’ll not be able to keep up, feel included, or just somehow get lost in the crowd.   We were told she wouldn’t have a 1:1 aide, but Claire most definitely needs one.  Reason 1) safety, and reason 2) to encourage (and help her) get the most out of her learning and play experience.  A 1:1 aide is one thing we’ll need to fight for since we feel she needs one and they feel a 1:1 aide prohibits independence.  I understand this but Claire’s case is different.  She needs the 1:1 to basically be her hands, help her use her ‘voice’ and assist her with each activity.  In addition, the school’s concern is that when a child gets a 1:1 aide, they become too attached to one adult in particular, and that’s not a good thing. Again, I see this point, but in Claire’s case, I’d rather her get too attached (and have to deal with change, as we all do from time to time when people move on to different things) vs. not giving her the chance to fully participate with her peers.

It was tough when the physical therapist told us she knew all about Rett… and then asked Claire to hold a ball and stand.  Due to her apraxia,  it would be near impossible for her to do both at the same time.  Claire fell hard and hit her head.  We were 5 feet away, watching.  The physical therapist was right with her.  It happened so fast.  Claire has a high pain tolerance and doesn’t cry much if she hurts herself.  She cried hard, and seeing this was difficult.  At this moment, I was cynical.  I thought, “we are right here and this happened… what’s going to happen when we aren’t here?”  Along with “why would you ask her to do this if you really knew about Rett?!”    I actually did ask them the second question of “why would you ask her to do this if you truly knew she wouldn’t be able?” and the answer I received was that it was a standard evaluation and they do that for everyone.  That didn’t sit well with me.  I don’t understand that logic since that would have put her in a position where she wasn’t safe.  Who knows… this may just be the beginning of having to grow an even thicker skin myself, or to remind myself to take deep breaths when things don’t make sense.  I do understand that certain processes are important to follow… to a point.

We are meeting with the school again in the upcoming weeks to continue this IEP process.  She’s supposed to start on April 8th (her 3rd birthday) but the more this process unfolds, the more I’m thinking we will hold off sending her right away as we originally planned.  Truthfully, it boils down to comfort level and right now, I don’t think it’s the right time.  Sean and I made this decision this week, and I have to say… I feel a little less stressed (worried) and a little more at peace.  Am I just delaying the inevitable because right now it’s “easier”?  Maybe.

As soon as we made this decision, I got excited.  My plans for her at this moment have changed.  I immediately signed her up for a music class because out of everything, she enjoys music the most.  She’s going to love being around the other kids – an added bonus. Secretly, I’m excited to have this “fun” time with her as well.  It’s not therapy.  It is just a series of mom/daughter moments that we’ll share.  I also signed her up for library storytime.  Finally (and this is where I especially get a bit giddy), I  went to a local teacher retail store this past week, and stocked up on early childhood education learning tools.  I purchased a book that gives you ideas on how to set up weekly lesson plans according to theme.  I also bought an actual lesson plan book, which will help me plan each week with whatever I decide to implement.  Each activity will need to be modified not only to give Claire a chance to do things “her way” but it’s another opportunity for me to build in her in home therapy homework.  I want this to be fun for her and I think it will.  I need a plan to follow myself or else I’ll get lost or distracted in the everyday shuffle.  I always wanted to be a teacher, and when I was at this teacher store looking through everything, I was in heaven!!!  My ideas were flowing and now I just need to put them to practice.

At this time, we’re hoping she’ll be ready in the Fall to attend preschool.  I’m pretty sure she will, and I know it will all happen when it’s supposed to.  It’s just about communication and patience, and trying to understand the needs of the child – and for us to really help explain to others what will be best for her.  It’ll be okay.  We’ll continue to partner with the school to make this happen.  In the meantime, I will try and bring a little more “life” and imagination to the home front, with regards to learning and my “lesson plans.”  (ha ha – love this!)   And if, come Fall, it’s still not the right time to send her, I’m okay with this too.  We’ll figure something out.  Whatever is best for Claire… that is all that matters.

It’s funny how a simple decision can bring you a bit more peace than perhaps the day before.  I’m going to continue to work hard to get her into the right school and setting.  In the meantime, I will most definitely enjoy this whole teaching thing myself, while perhaps even a music class or two with my bright blue eyed little girl.  :)

- Colleen

We have a new addition to our family.  That’s right… he was born on October 5^th, 2012, and is growing like a weed.  He’s currently 14 pounds and doing very well.  He has about the same color hair as Brendan and Claire.  He has brown eyes and a pretty strong frame.  We named him Murphy Brown Reilly…  and he is our dog. 

Sean and I were going back and forth for a while on whether or not we should get a dog for the kids.  We knew we always wanted one… it was just a matter of when and how.  After making a long pros and cons list, we decided now was the time, and the how, well… we will figure it out.  Murphy is a lot of work.  But we are beyond happy with this decision for the mere fact that he is not only teaching the kids how to take care of a pet, he’s giving them a chance to experience an unexplainable type of love that comes with having a pet.

And after the kids go to bed, I’d be lying if I told you I didn’t really enjoy this time with him.  We have a routine.  When it’s time to relax, I’ll grab my book, give Murphy a treat, and once he’s done with it, he’ll come over and cuddle with me.  Or if he’s feeling playful, he’ll go to Sean who will gladly rough house with him.

Murphy is our family pet, first and foremost.  He also comes with an added bonus though.  He is a mini golden doodle.  ½ golden retriever, ½ poodle.  He is the type of dog who has the potential to be a human’s guide/companion/helper dog.  While we want him to remain the family pet, we would still like to teach him to do certain things with Claire that we know he’s capable of.  In fact, it’s been recommended that we add a few goals to Claire’s therapy plan, which will require Murphy’s assistance.

One day as Claire’s speech therapy session was ending, Glenna (Claire’s speech therapist) asked how Murphy was doing.  I shot a video of he and Claire the day before and shared that with her.  As she was watching the video, I saw her face light up with happiness.  Below is the video… along with what came across her mind as she was viewing this.  (Thank you Glenna, for sharing your thoughts!)

Murphy & Claire

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From Glenna Greenwald:

“As a therapist sometimes I wonder if the skills worked on in therapy sessions ever generalize into other areas of children’s lives. It is something we all hope for but don’t always get to see. When Colleen said she had a great little video clip for me to see, I knew there was no doubt it would be cute. What I didn’t expect to see was that Claire was communicating with her new puppy.

I am sure that there are those who watch this clip and only see a darling little girl and a cute puppy. If that is the case for you, watch again; but this time with new eyes. Here’s why:

First of all, note that Claire starts off by using her single message button that says “Hi, watcha ‘doin?” and then bends close to him… Murphy gives her a little kiss.  They were communicating. Now just in case you happen to think that this was just a random action, she does it again. First, Claire presses the button on her toy to hear a song.  Then she goes back to the “Hi, watcha ‘doin?” button and again presses that, before giving Murphy a tap on his head (which is her way of showing affection to others).  When Claire starts to move away, she turns around and looks for Murphy while gesturing something like “come on”. Claire comes back to interact with Mom for a moment. Once Mom acknowledges Claire’s efforts, Claire waves “bye-bye” and goes in the other room with Murphy in tow.

What could be better than seeing just how much “buy-in” Claire has to the idea of communication? Because of her family and early intervention using augmentative communication methods, Claire naturally extends her efforts to the new puppy. Because of her communication experiences, Claire also assumes that her efforts will be recognized and understood.  And my guess is that Murphy will learn to listen to Claire with understanding from the heart!”

We’ve only had Murphy for about a month.  It’s pretty incredible to see already, what he’s done for our family…  well, maybe with the exception of how he’s already shown the kids how to escape from his playpen.     -Colleen

Happy New Year!!  I hope everyone had a wonderful holiday season and close to the year 2012.

I am one to make resolutions.  I just like setting goals and having something to work for… maybe not every day, but just to keep myself in check in the areas where a little extra work is needed.

My personal resolution is to get my health back on track… I know, I know…pretty cliché.  But my health has taken a back seat, and I’m hoping to make this a priority again. Right.  Soo… on to the next one.  I would like to simply, blog more.  To do a better job with updating you on Claire, updating you on us.  When we first set out on this “journey”, we created this site to take you along for the ride – “rain or shine.”  I haven’t really done the most consistent job at that.  The last time I wrote was a few months ago.   And for right or wrong, there are two main reasons I haven’t blogged.

One: lack of time.  As a mother of three young children (and a new puppy, Murphy), yes, the days come and go by very quickly.  You know how it goes.  Moving along…

I thought time was the only reason, until recently, I realized it was much more than that.

Two: I really struggle with what to write.  It’s easy to write about the milestones that were made because sharing happy thoughts is exciting and well… also easy to read.  But what about the subjects that are not really exciting or happy?  I don’t want to be a “Debbie Downer” and have you turn away.  But then again, I want to remain real because with Rett, it’s not always exciting, happy and fun.  With Rett, I’ve felt emotions and feelings I never knew existed… the amazing ones, the good ones, the bad ones, and well, the especially ugly ones.  It’s a constant rollercoaster ride.  So do I share the whole story?

Here are a couple of examples:

A few months ago, it was a beautiful, sunny and rather warm Friday in late October.  Claire and I were having the best morning.  I was excited because we were heading out to go tour Claire’s future preschool. I pulled into the parking lot and it just hit me out of the blue.  Sadness.  I realized Claire wouldn’t be going to school with her brothers.  Some of the best memories I have from growing up were sharing experiences with my brother and sister, and their friends.  Our friends.  We were all within 3 years of each other (God help my parents) and we had a blast growing up…  we were very close, and still are.  We always looked out for each other.  As I looked at all of the little buses that were lined up waiting to pick up the kids, I took a deep breath, forced a smile on my face, and told Claire that it was time to go inside… how exciting!  We walk inside and I saw all of the special chairs and walkers, and equipment that I’m not used to seeing within school hallways. Will this chair be okay and safe enough for Claire?  Concrete floors…  will these be okay for her?  Will Claire’s teachers understand her needs, and also, get to know how best to encourage Claire, know her limits, and take the time to learn all of what Claire already knows?  My mind starts racing, and I’m again, feeling worried and just – sad.  We sat on the couch for a few minutes, waiting to meet the school director.  I look over, and saw a classroom door open. Little children with the most adorable faces were all lined up, getting ready to walk to the indoor gym.   I am studying each child.  I look at Claire, and her eyes are glued on them.  Then, all of a sudden, I see one little face that Claire and I are very familiar with:  Madison.  You see, Madison and Claire both go to the same physical therapy place.  They share the same room, and have through the past few months, become friends.  She looked over at us.  Her face lit up, and she says “Hi!” (to me), and then in a louder, more enthusiastic voice, says,   “Hiiii Claire!!”   Just like she does in therapy.  I look at Claire and she’s smiling, big time.  At that moment, I felt comforted… and some of the sadness and worry I had been feeling, slowly went away.  Part of me even felt a bit foolish for being sad in the first place.  It’s all about perspective.  Things could be a whole heck of a lot worse and I have a million reasons why.  In this case though, my child has a school to go to.  It has great equipment.  It has busing.  And most importantly, there’s already a friendly face that will help Claire with her transition to attending.  It may not be her brothers, but it will be okay.

The fall and winter were rough for the other Rett families, and my heart is heavy when thinking of them. “We lost another angel.”  I hate hearing, seeing or saying these words.  It happens way too often, as I’m learning this occurs every few weeks it seems. This fall, we lost Anna, who was 4 years old, and Emma who was 5.  There were several others, and actually one tonight, Breanna who was 16 years old.  Hearing this news, especially after the brightest of moments, is very difficult. Sudden death… this is the reality.  Complications of pneumonia.  Every time she gets sick, will it turn into something more?  When she’s sleeping, or maybe when she’s making a weird noise….is that a seizure?  Is it more?  Is she okay?  We don’t know what’s in store for Claire. We don’t know what’s in store for any of us.   The reality though, is that Rett creates a bit more fear and worry than I would have asked to bargain for.  My mind is always up and down, filled with enjoying the most simplest pleasures and blessings of life, and then sometimes hearing this news, at least for me, causes me to shut down and withdrawal until I can find the strength to think positively again.

I have grown to accept though, that it’s still also okay to experience sadness, anger, and other similar types of emotions, sometimes out of the blue, among the positive ones.  You can’t control emotions.  You can only control what you do with them.  When I need to withdrawal, even if just for a short period of time, I do it.  I say a prayer for God’s grace and a little extra strength, and I do my best to get back on track.  I also say a prayer of thanksgiving, especially for my husband, who is on this ride with me.  He gets it.  He experiences it too.  He gets me.  And on those days where I’m a little “off”, he is extra patient and offers a few more hugs.

We are hoping the more we share with you our experiences with Rett Syndrome, the more you can learn and begin to understand what Claire is going through.  Hopefully word spreads to your friends and families, and then on to theirs.  Taking our story “viral” only helps to create awareness.  Our biggest hope is that this then translates into more involvement with Claire’s Crusade, an organization we established so that through time, we can help make a difference on a much larger scale not only for Claire, but for every girl like her.

I am thinking in order to share with you our experiences (assuming you are also ready to ride that rollercoaster), I need to keep the blogs shorter (for one), but also, simpler. To do this, and to meet my New Years resolution of writing more, I’ll leave you with this:  We made a promise to you – to bring you along rain or shine.  So, here we go!   Some blogs will just be updates on her therapies.  Some blogs will be from others’ perspectives.  Some blogs will just be happy, and other blogs will probably, for better or worse, be the opposite.  It is what it is, and that’s okay.

Happy 2013!!

- Colleen

It’s a funny thing about reflection – you look back and realize, in spite of everything, there are common threads of goodness strung through your life and suddenly it’s easy to see just how good you really have it.  It helps you appreciate the “little” things in life.

Then the “devil” hovering over your other shoulder slaps you in the head like you’re crazy.

I’m pretty sure since Claire’s diagnosis I’ve developed some type of multiple personality disorder.  One minute I find myself marveling at life’s simple pleasures, then I twitch and next thing you know I’m incredibly sad, angry at the world – or both.  Before you know it, I’m back – even keeled, calm, cool and collected.  It’s a vicious cycle.  Those of you who’ve been telling me for years that I’m nuts, I’m starting to believe you!

Here’s an example:

I remember standing in Cleveland Browns Stadium during the National Anthem just before kickoff of the Browns season finale against the Washington Redskins just a few weeks back.  This guy’s rendition may have been 2 minutes long (wasn’t too bad actually), but it felt like 2 hours as my head was all over the place. 

As I looked around, it was a beautiful day – sunny, a little chilly, but no snow…totally unexpected for late December in CLE.  I was very happy, very appreciative, very thankful to be there next to my father.  Browns games are our thing – it’s what we do.  We’ve done it since I was 8 years old or so.  Been to every home game with him since (except for that ’86 AFC Championship game…Dad, should’ve taken me instead of Joe – result would’ve been different!) – even while I was working for the team, I made sure to stop by on game day and visit for a few if I could.  Like I said, it’s what we do.  On that day, at that moment, I couldn’t have been happier.

Scanning the crowd, the whole stadium scene, I looked to the field and noticed the grounds crew.  As they typically do, they were lined up along the back of the endzone.  Except today, someone was missing.  In his place were just his shoes with his hat placed on top of them.  Behind them, there were the initials “EE” in a circle on the field wall next to a sign that read “Eric’s Endzone, We’ll Miss You”.  See, a friend of mine from the Browns tragically took his own life the day before.  How terrible.  I hadn’t seen him since I left the team, but he was the nicest person on staff, no question.  Always quick to offer a smile and a handshake, even quicker to ask how you were.  I had no idea he was in that much pain, that he was suffering so much on the inside.  I absolutely felt terrible.  So sad – so sad for him and for those he left behind.

Continuing to gaze out over the field and seeing our country’s flag waiving in the wind, I started to think about how much I take for granted living in this country.  Freedom, for one – definitely thankful for those that fight every day to keep this the greatest country on the planet. 

My mind started to wander through all of the things freedom affords us – life, liberty, the pursuit of happiness, the right to bear arms.  Screeching halt.  (If you remember, this was the weekend after the horrific tragedy in Connecticut.)  What the parents of those children in Connecticut must be going through having their kids gunned down in cold blood for absolutely no reason.  Their lives taken from them before they even had a chance for it to start.  How about the kids who were there, but were spared?  The fear, the terror they must have experienced…their innocence ripped from them.  The fact that we even have to worry about this kind of thing happening is crazy, let alone worrying that it could happen in OUR kid’s school.  Terrible.  No kid should have to go through that, no parent should have to bury their kid at such an incredibly young age.

You know what, it doesn’t matter how kids die – they just shouldn’t.  A few weeks earlier, another girl lost her battle with Rett Syndrome.  I say “another”, because this disorder is a serial killer in its own right – taking too, too many lives (including two more in the past week).  This one was different though.  We shared the same last name as this family.  Their daughter shared the same name as our daughter and the girls were roughly the same age.  This mother was one of the first to reach out to us when word began to spread about throughout the Rett community about Claire’s diagnosis.  Rest in peace Emma Claire Reilly, may you now fly free.  God speed Reilly family.

As I looked off into the sky and temporarily fall into a trance…

You know what, <forget> Rett Syndrome.  Why Claire?  What did she do to deserve this?  Why was she given this life sentence?  Why is she the one forced to live silently, strapped in a chair with her hands wrapped up like a pretzel in front of her face?  Why is she the one going through therapy every day?  Why is she the one who can’t run around and play with her brothers?  Why her?!  <Shoot>, why us – why me?!  I’ve done some things I regret in my time, but nothing to deserve this.  What did I do to deserve to struggle to get through every single day?  Why am I the lucky one who gets to fight with insurance companies, government agencies and schools?  Why did Colleen have to trade her job and her career in for daily trips to Cleveland Clinic?  Why are we the ones who get to constantly cry ourselves to sleep?  This is all bull<honkey>!  Why do our boys even know what Rett Syndrome is – <heck>, why do we?  We were doing perfectly fine before all of this…why!?

Because this is the hand we were dealt.  Because it is what it is.  Because life is only what you make of it.  Because God doesn’t give you any more than you can handle.  Luck of the Irish.  Luck of the draw.  Murphy’s Law.  Whatever.

Claire is daddy’s little girl.  Rett Syndrome will not, cannot beat me.  I will not let it ruin my marriage, I will not let it tear my family apart, and with God as my witness, I will do everything in my power to make sure it does not take my little girl from me anymore than it already has.  I will make sure she has every opportunity, every resource, every specialist by her side so my  dreams, our dreams, her dreams come true and one day I will hear her voice, I will watch her run.  I will help her through this – she is not alone.  You know what, we are not alone.  The boys will be stronger because of this.  WE will be stronger because of this.  This is why.

“And the hoooooommmmmmmmeeeeee of the braaaaaaaavvvvvvvvvvveeeeeeee!” 

Snap out of it – back to reality.  Like the Browns, beaten and battered, we live to fight another day.

Besides the multiple personality issues I’m obviously coping with, and despite what the “devil” on my shoulder may say about it, life is good.  This was never more evident than over the holidays.  Each Christmas card we received reminded me of what great friends we have.  Spending time with family reinforced just how strong our support system is.  Being able to take some time away from work and spend time with each of the kids and with Colleen really solidified what life is all about.  Each day is a gift.  Every person that is in your life is there for a reason. 

My New Year’s resolution?  Try to live more “in the moment”, enjoy the present – don’t dwell on the past, don’t worry (too much) about the future.  Enjoy every minute of today because you never know what tomorrow holds.  Hug more.  Kiss more.  Celebrate the “little things”.

SMR

No huge updates to report on the therapy end – well, not like the last post…which was sort of a big one!  I do have updates though – along with a quick video I put together.

Physical Therapy Updates:

1)    Claire’s walking is about the same as last month.  That’s okay though – we know patience, and although we still don’t know if she’ll independently walk without assistance, we do know she’s getting stronger and more confident with her movements.

2)    Claire is starting to explore her surroundings a bit, and is getting better with her “motor planning” execution.  In other words, within the past month, she has learned how to crawl from the family room to the toy room – and that there is a purpose in doing so.  She now knows (well, remembers) that in order to get to her toys, she first needs to pass through the kitchen.  It’s a simple task that may seem easy to do.  But for Claire, she knows what she wants to do or where she wants to go, however, telling her body to do it, is extremely difficult.  Many times she gets stuck at the kitchen table or chairs, and does not know how to get around them.  The fact that she’s trying, though, is huge.

3)    For the 1^st time in a year, she is starting to remember how to cruise along furniture.  Some days she can go from the couch to the loveseat (using the end table to bridge the gap) and other days, she can only from one end of the couch to another.  A few months ago (and for the past year, really) she was unable to do any of this, so again, there is progress.

Occupational Therapy Updates:

Claire is starting to lift her left hand a little bit more.   She is also becoming more purposeful with her swiping or swatting with regards to her right hand.  She especially reminds me to “hurry up” when I’m feeding her… if especially hungry, she’ll leap forward in her highchair and successfully knock the bowl over in an attempt to “do it herself.”  She’s demanding independence!   On a side note, she reminds us that she’s a typical 2 year old when she refuses to open her mouth when you feed her because she doesn’t like what you are giving her.  She’ll close her lips tightly, and turn her face the other way.  When you say “Claire…” she will look at you, sparkles in her eyes, and those lips turn into quite the smirk.

My dream for her, in terms of occupational therapy, is for her to color or paint by herself, feed herself, or pick up an object she wants.  We are exploring adaptive equipment right now, along with additional bracing for her hands.  Crossing fingers, although I do know this category in particular is extremely difficult for our Rett girls.  It’s a long shot – any of the above dreams, so I’ve been told.  However, they are still dreams, and I’m not ready to dismiss these just yet.

Speech Therapy Updates:

We’ve been focusing a lot this past month on literacy.  Ms. Glenna needed to test Claire for some paperwork to track her progress, and we discovered Claire knows her ABCs.   We are currently working on numbers, and I picked up some “easy to read” books because if Claire learns to read, this can really unlock her world in many ways.

Aquatic Therapy:

Unfortunately, Claire’s therapist has been out on medical leave so she hasn’t been in the water much.  I hope to get her back in asap.  I called a different location and we’re hoping to get her started within the next couple of weeks.

Music Therapy:

Claire, her brother, and “Grammy” (one of Claire’s grandmothers) went to a music class – for all kids ages 0-5.  It is through a place that offers individual music therapy.  The class was a huge hit and we’ll get her enrolled somewhere – right now, I’m thinking that she would enjoy more of the class type setting vs. individual, because she’s showing a big interest in being around other children.

In closing –

This is a more thorough update than normal – hopefully not too long.   I’ll close with the following thought:

I remember at one of our 1^st Rett support meetings, another mom told me that with Rett, everyday is “consistently inconsistent.”  I understand what this means now.  Some days, Claire does great and is on top of her game in therapy, or just in ‘general’.  Other days, apraxia sets in, and it’s almost like a “reset” button, where she is starting from scratch and really struggles to do even the simplest of tasks… even the tasks she’s done over and over previously.   I especially struggle with these days because Claire is frustrated and tells us with her communication book that she “wants to do what the others are doing,” that “she’s mad, or sad” or “frustrated.”   Or some times, she cries a lot, and I don’t know what’s wrong or how to help her… and she doesn’t know how to tell me… so this takes its toll.  Those moments are the ones that are the most difficult.  With any parent, when you child struggles, you want to help them, disability or not.  So those are the times where you chalk it up to ‘one of those days’ and know that tomorrow is a new day.

One small goal I had for myself, was to learn how to put together a slideshow.  I know, I know.  I may be a bit behind technological times.  But, it’s been on my list as a personal goal for a while, and somehow last night, I just did it.  Hope you enjoy!

I call it:  Blessings in Disguise.

As Claire continues to work hard in her daily therapy sessions, her brothers, who are many times behind the scenes by default, shine through in so many ways.  These boys are amazing, and we are so proud of them.  They have learned about a unique type of love that’s extraordinary and hard to put into words.  We all have.  And this is a small example of what people refer to as a “blessing in disguise.”  These boys are something else.  All three kids are.  And for this, Sean and I are blessed.

Blessings in Disguise

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This summer, as we get towards the end of each week, we look forward to escaping reality and heading to my parents’ summer home, which is about an hour 1/2 away.  Maybe not every weekend, but as much as we possibly can.  We never made this a priority before, but this summer has been different.  We are very grateful for being able to go – my parents welcome us each time, and are extremely tolerant of the increased decibel level of noise that seems to be present when we are there.  Going there is truly an escape.  The serenity of the water, the beauty of the sunsets, the joy of looking for seaglass on the beach and throwing rocks in Lake Erie are all on our list of favorite activities to do when we are there.  Or maybe it’s playing in the sandbox, going swimming, or looking for “Tinkerbell” in the woods and “secret” tunnels.  Bottom line – we go there because, yes, it’s a break from reality and the regular “work” week.  But, getting away, simply put, gives us a chance to recharge, clear our minds, and be together as a family with less distractions.  When we are there, we are doing less for our individual agendas, and more things together as a family.  After this past year (and increased amounts of stress – even felt by the kids), we knew we needed to get back on track.  And I think it’s been helping, a lot.

Today is Thursday, July 19th…  we left for Claire’s therapy at 8:15 am and were home afterwards, around 11:45 am.  Typical day.  However, today, the boys told me they really wanted to come see Claire vs. going to their summer camp.  ”Are you sure?”  I asked…  ”Yes, Mom… we want to go.”  Okay, then.  They never ask to come, so today, I figured I’d pack them their breakfast and snack, “Angry Birds” coloring books (thanks to Grandma!) and an extra set of patience, because I knew I needed it.  They are awesome kids, but let’s face it… they are kids.  Sitting still while Claire is in 2 hours of straight therapy is something that after the 1st hour, seems to lose it’s appeal.  Let’s just say after the 2 hours are up, we are all ready for a break (from each other)!

I was selfishly excited though that they wanted to come because that meant we’d have a chance to get out of town earlier.  We’d come home from therapy, pack up, and head out…  not having to wait those extra hours for when camp was over.  They were just as excited.  So, here we are.  But the day went on, and after therapy, everyone was crabby.  So, I demanded nap time, which didn’t go over very well – causing more crabbiness.  Next thing I know, I’m telling them that we are no longer going today because they didn’t have “thumbs up” days.  And here we are, at 3:00 pm.  I want to give in, saying, “let’s go now!” but given how their listening ears weren’t really ‘on’ , yet their mouths (and talking back) were, I knew I had to, unfortunately, follow through with “consequences”.   Meanwhile, I’m just mad because we wasted a whole Thursday by this point.  A Thursday, where we had the chance to get away a day earlier, but totally didn’t take advantage…

It was worth it.  And it happened for a reason.

Today, the unexpected happened.  TODAY SHE DID IT.

Claire’s Walking

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Claire’s Walking 2!

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You see, Claire has the “typical” Rett diagnosis, which means, most girls with her mutation (as they call it), don’t ever walk.  The goal of ours (which we mentioned previously), was to prove that wrong, no matter the odds.  Claire (and her therapists) have been working extremely hard, to make that happen.   Instead of leaving, we spent those extra hours in our front yard.  The boys were riding their bikes, and Claire had her gait trainer out.  She wasn’t interested in it though.  Nolan went inside to grab a toy for Claire, and when he came back out, I took Claire out of her gait trainer.  ”Okay”  I said.  ”You want to do this on your own?”   And while Nolan held her favorite toy in front of her, I supported Claire the way we practiced this past week in therapy, and she was getting more comfortable with her moves.  Our awesome neighbors Kelly and Cassie (who have been especially close with helping babysit the kids, etc) were there as well.  Claire went from being more comfortable, to taking a step on her own…  to 2 steps, to 4…  We were all amazed, and kept cheering her on.

Fast forward a couple of hours.  It’s right after dinner.  Sean’s upstairs helping the boys get ready for bed.  I’m downstairs with Claire.  The boys fell asleep and Sean was heading downstairs.  Claire and I were in the family room.  I had a few of her favorite toys out and I placed them on the couches.  I continued the same exercise as practiced outside a few hours earlier, and she showed even more interest.  Those 2 steps turned into 4 steps.  OH MY GOSH… she’s walking 1/2 the distance of the width of the room!  Then, it turned into more, and more steps.  And her face, lit up.  She was so determined and proud.  Uncle John, Aunt Marie, Caitlin and Jack happened to be passing through, and they cheered her on, which motivated her even more.  She just kept going.  And as I type this, I’m still in shock.  The unthinkable happened today.  As I mentioned before…  as a parent, when you are given a diagnosis of your child, you are overcome with fear, grief, and worry.  It’s easy to say “you know what?  Just deal with it.”  But when you are not living that diagnosis every single second of every day, you just don’t know.  You can’t begin to realize the set amount of emotions you will feel… as a mother.  As a dad.  Together, as parents.  Wow… as parents, together.  As Claire’s sibling…  there’s a lot to it!  It’s hard to truly understand the toll something like “Rett” can actually do to a family until you are living it, day in and day out.  It’s not happy go lucky, all the time, believe me.  It’s not all glorious and “hey, look at what she’s done today!”  Because you know what?  As I was sitting just last night, I was still grieving in the fact that I was upset she couldn’t scratch her nose if it was itching her.  And at this point, telling me “Hey Mom… can you please scratch my nose because I can’t do it?” would take 10 minutes… that made me sad.  When you don’t sleep because she’s up, all night long…  I tend to get extremely crabby, and hate to say it, but am not the greatest mother the next day, or wife… I’m pretty sure about that.

So when moments like today happen, they happen, and they are a reason to celebrate.  And I CANNOT wait until tomorrow morning when those sweet boys awake.  Because they are going to see their little sister WALK.  A dream they’ve shared with me, multiple times, has come true.  They are going to be so happy.  And we are going to pack up and head out of town again… in a different way this time – in celebration as a family vs. ‘the need to escape”.

- Colleen