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