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.

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.

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

In this clip, Claire is using the Tobii talker to tell her speech therapist, Ms. Glenna, about her recent vacation. At times, it’s hard to hear… but – here’s what Claire’s trying to say.

1) During her vacation, she used this talker to ‘talk/play’ with her friend, Gavin (who is also 2 years old) — Gavin is “Mr. Matt’s son” and “Grace” is his sister (she will tell you that).  She looks closely to the pictures before touching them… you will see this too.

2) She then told Ms. Glenna she was playing “toys” with Gavin (which was true), but then she pressed “puzzle” (on accident, because many times, her hand movements aren’t controlled) — Glenna thought she was trying to say she played a puzzle with Gavin (but she didn’t).

3) Claire then pressed “oops” and tried to tell her something else.

4) Claire was then trying to tell Ms. Glenna that during her vacation, a ‘special thing’ happened. Claire first pointed to a ‘prize’ picture. Then a ‘party’ picture. Ms. Glenna thought Claire was still talking about her party with Gavin. Claire touches the ‘oops’ button because that’s not what she’s trying to say (as this is happening, I understand what she’s trying to say – You will hear me say this…).

5) Claire goes back a page and hits the ‘prize’ or present…. followed by a cake…. followed by birthday. It was a special event – with presents – birthday. She was trying to tell Ms. Glenna that during our 4th of July vacation, we celebrated my (Mom’s) birthday. She then proceeded (not in this video) to explain how she went on a boat ride, etc.

Crazy… this little girl is so patient with getting us to understand her. She continues to teach us so much!

– Colleen

Never once in my 35 year existence had I even considered running anywhere other than on a football field, down a basketball court or around the bases – unless, of course, I was being chased.  I never really could grasp why someone would want to run just for the sake of running.  I couldn’t comprehend.  Why run?

Even with our amazing friend Kate running the Wrightsville Beach, NC Half Marathon this past March in support of Claire (see: www.clairescrusade.net), I still didn’t get it.  Incidently, Kate ended up finishing in 2:19:46 at a pace of 10:49 – even after throwing out her back just days earlier.  Mind you, she trained for this event in between caring for her 3 small children – and her husband Bobby – managing their growing household, and running her own business.  So why run 13.1 miles with so much else to do?

When our cousin Lauren told us she was going to run the Cleveland Half Marathon with her father, our Uncle Frank, and that they wanted to do so in honor of Claire, we were very moved by the gesture, but I still didn’t get why anyone would want to run that far for no apparent reason.   Putting my confusion aside, we set up Claire’s Crusade as an official Charity Partner of the Cleveland Marathon naming Frank and Lauren as team captains.  Come race day, Claire’s Crusade was represented by 45 runners and walkers participating in the 5K, 10K and Half Marathon.  Additionally, we had 4 “mini crusaders” participate in the Kids’ Race!  Our cousin John even organized the official Claire’s Crusade Marathon After Party.  We left no doubt that we meant business.  But why run?

Standing with the other 1,064 people waiting to start the 5K race, I pondered what it was that I had gotten myself into exactly.  I was about to run 3.1 miles longer than I wanted to and had no idea how I was going to do it.  I had neglected one minor detail in my preparation for the day’s event – TRAINING.

Somewhere during my 0:28:15 jog through downtown Cleveland the symbolism of it all hit me.  I was running away from the fact that my daughter has Rett Syndrome, but with Claire’s Crusade proudly displayed on the front of my shirt, I was running toward the day when she will be able to run with me, toward the day when I first hear her speak.  No matter what, I was not going to stop running until I reached the finish line.  No chance I was quitting, no chance I was going to walk.

Each hill on the course brought about thoughts of the ups and downs we’ve experienced since Claire’s diagnosis this past June.  Thoughts of the emotional roller coaster we’ve been stuck on rushing by with each passing street.  Suddenly, it was clear to me.  Our “new normal” is a marathon.  It’s a matter of pacing ourselves to go the distance.

You see, after the diagnosis, we came out in a full sprint and, as a result, quickly burnt ourselves out.  I don’t think it’s a coincidence that Kate, Lauren, Frank and the rest of Claire’s Crusaders, and now a great friend of Col’s from Notre Dame, Billy (who is training to run the Chicago Marathon in October – yes, the full MARATHON – in the name of Claire’s Crusade), introduced us to distance running.  I truly believe it is a sign from above to slow down.  There’s no question that we’re in for a very long race and we won’t last very long at the pace we’ve been going.

Seeing nearly 50 people participate throughout the weekend sporting Claire’s Crusade gear literally brought me to tears.  In a distance race, it’s real easy to feel alone and isolated as, at times, it’s just you and the pavement.  Then you turn the corner and see friends and family cheering you on, or a teammate runs by and gives you a motivational tap on the behind, or when you can see the finish line but you’re not so sure how you’re going to make it there until a teammate comes out of the blue to run by your side to the end.  You quickly realize that you’re not alone.  It’s hard to describe that moment and put it into words, but it is as if a giant weight is lifted off of your shoulders.

To each one of Claire’s Crusaders, and to those of you that were crusading with us this past weekend in spirit, we thank you for your support.  There truly is comfort in knowing that we won’t be running this race alone.

SMR

P.S.  Click here for the full Claire’s Crusade Cleveland Marathon photo gallery

Happy 2^nd birthday to Claire!  Her birthday fell on Easter Sunday this year, and it was a beautiful day.  Her face lit up when we told her she was such a big girl.  In fact, she danced proudly every time she heard the Happy Birthday song.

We’ve been busy this past month finishing up the creation of what we refer to as Claire’s medical baseline.  In the beginning of April, Claire went through a clinic at the Pediatric Center for Airway, Voice and Swallowing.  Claire was seen by experts specializing in Pediatric Otolaryngology (ENT), Pediatric Pulmonary, Pediatric Gastroenterology, Pediatric Speech Pathology & Swallowing, Nutrition, and Pediatric Rehabilitation & Therapy.  The wait list to get into this clinic was long, but well worth it.  The physicians and experts cycled through our room and after our visit, all met to discuss Claire’s condition and associated recommendations. It was determined that Claire definitely needed tubes in her ears, and while under anesthesia, she should have an upper endoscopy completed to rule out damage to her esophagus from possible acid reflux.  During surgery, Claire should also have her tonsils and adenoids checked, along with a procedure to check her hearing.  Claire underwent surgery last week, and everything went well.

During the past month, Claire also visited the Feeding Clinic at the Cleveland Clinic Children’s Hospital.  Claire’s feeding evaluation team consisted of a Developmental Pediatrician, a Clinic Psychologist Program Director, a Clinical Dietician, and an Occupational Therapist.   The team monitored Claire’s feeding behaviors as she ate and drank under their careful observation.  Claire also underwent her 2^nd swallow study.  Recommendations coming out of the Feeding Clinic and swallow study include pureeing Claire’s food as she gags on other textures.  Claire’s ability to drink will also require more attention.  She will continue her steady diet of 50/50 Pediasure and milk, but we will look to transition her off of the bottle.  This transition is easier said than done.  Over the past year and half, I think we’ve tried every “sippy cup” on the market with no luck.  Claire has difficulty forming her mouth the right way around the nozzle or straw.  Currently, for water and juice, we use a medicine dropper to get her the additional liquids she needs.  Her team had some great suggestions though, which we will incorporate.  We will also begin to thicken all liquids with a special Rx gel; we’ve only tried it a couple of times, but it seems to help thus far.

Claire is still attending the Mobility Clinic as well as her typical 8 therapies a week.

Yes, with the completion of these clinics, along with the prior visits she had with 35 specialists in the past year,   I am happy to say Claire’s medical baseline is now F.I.N.I.S.H.E.D.  We finally understand where Claire is today, literally from head to toe. This baseline will help us know as she grows, where we need to focus if she regresses, or where to celebrate, if you will, in the areas where she has progressed.

After Claire’s diagnosis last summer, Sean and I started going to a Rett Support group.  I remember blankly staring at other Rett moms when they told me during one of the first sessions that we’d eventually get used to our new normal of doctors’ appointments, etc. They told me that things would gradually get easier as Claire’s care plan would eventually come together.  I remember at that time being so overwhelmed and feeling like this would never be possible.

I can’t believe it but a year later, here we are.  We have arrived at our new normal.  Claire’s baseline is finished, and her care plan is in place.  We have a medical team, we know where we need to focus our efforts, and we know our next steps.  We know what questions to ask. We feel comfortable finally, and for this, we are thankful.

– Colleen

I came across this picture a few weeks ago, and was very inspired by it.  It was something I needed to read and be reminded of.  It refers to positive thinking.  It refers to not giving up, even if the odds are against you.  Most importantly, it refers to being a role model to your child.  What you believe is what your child most likely will grow to believe.  That is a pretty powerful responsibility as a mother.  One that I needed a little brushing up on…

Rett Syndrome challenges me and my ‘positive thinking’ every single day.  This is an understatement.  Where I used to naturally find myself always seeing the glass half full, I have to admit… doing that now is something that is extremely difficult for me to do.   I needed the reminder that what I do as Claire’s mother, really does matter.  Every bit of it.  And she is taking every little (and big) bit in.

Tonight at dinner, after seeing this picture, whether or not I believed it at the time, I told Claire that one day she would walk.  She was in the middle of chewing her food, and she looked me straight in the eyes and paused.  I said it again, “Claire… You are gonna walk one day… You are!!” and she continued to look at me, and then gave me the biggest smile.  She understood me.  Every single word.  Her smile was huge, and her eyes were of purpose.

Claire was the one who taught me something here.  And I will never forget it.  She and I are together, nonstop.  Her ears and eyes are on me… soaking me up “like a sponge” as they call it.  She may be nonverbal, but she gets it.  (another blog will be on nonverbal children and what they ‘understand’ … but another day)  🙂

Bottom line… one of my biggest wishes for Claire, is for her to walk independently.  My 6 year old son asked me, “Mom… if Claire walks one day, what will happen?”  I told him, “Nolan… we are gonna throw a party.  One big party to celebrate because she’s worked so hard to get to this point.”  And it’s true.  This would be one momentous occasion that we will celebrate, for sure.

She will be “2” on Easter Sunday.   She has physical therapy 3x a week, and has just started aquatic therapy (these are in addition to her occupational and speech therapies… again, a post for another day).  What she does in therapy, Sean and I try to replicate in our home setting.  We try ‘hip helpers’ (aka: shorts that she wears to help keep her feet together), obstacle courses, different walkers, gait trainers and standers…  She’s gone to the Cleveland Clinic mobility clinic to try out different types of equipment in addition to her therapies, and was fitted for a power wheelchair.  Whether or not she will be able to walk, we want to give her as much independence as possible.  So we are exploring every single option.  We get her toys that help motivate her… we get the toys she uses in therapies to try and create similar obstacle courses at home… we try and create ‘vertical space’ at home.  Last week, she was fitted for orthotic shoe inserts.  Depending on how she does with this, we may or may not proceed with getting her AFOs (ankle, foot, orthotics).

It’s hard to sum up her therapies and what she’s doing, but these pictures and videos at least help paint the picture.

As for her overall mobility… we will continue to try and reach this goal.   And on those days where I’m not overly optimistic myself, or just ‘having one of those days’, I’ll remember the picture above that was first mentioned, and I’ll keep those thoughts to myself.  Because there is a little girl who is looking up at me, every ‘step’ of the way…  one strong and beautiful little girl who will be ‘2’ in a few days.  🙂

Claire doing an obstacle course during a recent physical therapy session. The goal is to use a narrow pathway to get Claire used to walking with her feet closer together.

Claire's trying out a 'stander' at physical therapy to see if this will help her stand independently.

Claire utilizing 'vertical space' at physical therapy. The tape on the cabinet is a visual queue to help Claire move from chair A to chair B.

Claire trying out a gait trainer at physical therapy. The gait trainer is to provide Claire with a means of moving independently. She wasn't crazy about this one...but we'll find the right fit.

Claire attended the Mobility Clinic at Cleveland Clinic to be ‘fitted’ for a wheelchair.  In  a matter of minutes, she learned to turn this power wheel chair on her own using her head to apply pressure to the head rest.

Claire’s physical therapist is using a trapeze to suspend one of Claire’s favorite toys in air to give Claire more confidence with her vertical space.  It’s working – she takes her 1st steps (as I help Nolan with his homework)!

– Colleen