Walking on Sunshine

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

Claire’s Voice

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

It’s a marathon, not a sprint

Cleveland Marathon

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

Post RaceBearBoys

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

Baseline

Happy Birthday Claire!

Happy 2nd 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.

Birthday Girl

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.

Claire Surgery 1Claire Surgery 2

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 2nd 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.

Parallel Bars

Therapy 2

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

Big Smile

On Mobility and Positive Thinking

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

 

Happy St. Patrick’s Day!

This picture was taken last year on St. Patrick’s Day.  As I look at it now, one year later, we should have known. 

This is a snapshot of Claire in the midst of her “regression”.  At this point, she’s gone completely inward – seemingly uninterested in anything or anyone around her.  As the expression goes, she’s “out in left field”.  Purposeful hand movements are starting to be replaced with odd, repetitive movements around her mouth.  But most concerning, her near constant smile is gone, and along with it, her infectious personality.  The few words she was able to say at one point are gone too.  We had no idea what was happening, but we knew she needed help.

Three months later, the question of “what” was answered – it was Rett Syndrome.

Another nine months later and here we are getting ready for St. Patrick’s Day 2012.  We’ve been through a lot in this short amount of time.  At this point, I think we’ve accepted the fact that this is reality, although we still wrestle with the question “why?”  I know, personally, at times I struggle with believing that “everything happens for a reason” and “God doesn’t give you more than you can handle.” 

This “reality” is far from easy, but we’re doing alright though.  At the end of the day, you really just have to stop thinking and just do. 

We definitely dove into the deep end head first.  Since the diagnosis, we’ve surrounded Claire with the very best doctors, specialists and therapists.  We’ve reached out to every County, State and Federal agency for additional resources (unfortunately, without much success).  We’ve made a conscious effort to become leaders in the Rett community and are laser focused on helping researchers find a cure for Rett Syndrome and assisting other families like our own (see: Claire’s Crusade).

Colleen is now home on a full time basis to manage and coordinate Claire’s care while trying to balance the demands of Claire’s needs with those of the boys.  Speaking of the boys, they’re champs.  They really are great big brothers and both are flourishing in school – Nolan in kindergarten and Brendan in preschool.  Like us, they have their ups and downs with this whole thing, but they’re fighters.  Col is really the glue that is keeping us all together; she really is amazing. 

Every day seems to present a different challenge, but with the overwhelming amount of support we receive from friends and family, we keep coming out on top.

Much thanks and much love to all – you know who you are.

Slainte!

SMR