Summertime...

"Summertime, and the livin' is easy" - George Gershwin.   

I've always loved summer.  Living in New England, there is not a day too hot and humid for me.  I know with certainty that in the blink of an eye the long, warm, easy days of summer will be behind us, and the cold fall winds will begin to blow. 

I always envisioned my children's summertime memories to be much like mine...days filled running around with their friends, swimming in the pool, running to the passing ice cream truck, and spending as much time on the beach as possible. 

For Connor, summer is turning out to be all that and more.  He is having the time of his life, running around with his buddies, going to birthday parties, perfecting his dodge ball game at camp, and working on his cannon ball.   Life is good for Connor.

For Kaitlyn, this summer has had plenty of good times, and quite a few challenges as well.  Like me, she loves the summer weather.  She is happiest outside, reading a book, swimming in the pool, or swinging on her swing set.  However, some of the things she wants to do are proving to be quite difficult for her.

This past year she went through a big growth spurt, growing over 4".  The downside to that is that her tight muscles did not have the ability to keep up with the rate at which her bones grew.  The tight muscles pulling on her bones caused several of her bones to twist.  Her mobility has been negatively impacted, and there is a chance that she'll need a difficult surgery that involves breaking her bones and rotating them back to the proper position.  A few weeks ago Kaitlyn had a series of injections into the muscles and nerves of her hips, hamstrings, quads and calves in order to decrease some of the tightness in her legs.  The goal of the injections is to loosen her muscles enough to allow her bones to grow without being twisted over this next year, and perhaps help in preventing the need for surgery.  By the way, I have no idea why she was so happy the day of her injections after not eating since the day before, getting up at 5:00 a.m., and sitting around a hospital for hours, but take a look for yourself...

While having increased flexibility is certainly helpful when it comes to growth, it is decidedly problematic for mobility.  As it turns out Kaitlyn was using her high muscle tone to help with her ambulation.  With the loss of that tone, we are seeing just how weak Kaitlyn's muscles are.  She has gone from walking independently in most situations, to struggling to get from the living room to the dinner table without falling. 

Last week we took our annual vacation to the beach.  There is a spot way down from where we sit on the beach that we like to walk to during low tide to search for crabs, snails and starfish.  Last year Kaitlyn was able to walk nearly the entire distance on her own.  This year she was only able to take a few steps before falling.  While she tried to get up and keep going time and time again, it was clear that this walk wasn't going to be possible for her this year.  Luckily she was able to hitch a ride with Dad...

That is just one example of the challenges Kaitlyn has faced since the injections.  There is no camp for her this summer.  There is no running around the yard with her friends.  There is no riding her bike with the neighborhood kids.  There is living with pain.  There is dealing with the frustration that her body won't do what she wants it to do.  There are physical therapy visits.  There are daily stretching and exercise sessions at home.  Sigh.

Chris and I are doing everything we can to make this summer fun for Kaitlyn.  She and I have a few hours alone each day while Connor is at camp.  We spend that time shopping, baking, doing art projects, or doing just about anything else she asks me to. She has been swimming just about every single day, which she loves.  Luckily being in the water is easy for her, and is also great exercise.  She has some fantastic friends with incredibly supportive moms who make sure that she still gets to hang out and have some girl time.  Having said all of that there isn't a day that goes by that I don't wish that things were easy for her.  I wish she could run and ring a friends doorbell on her own.  I wish she could hop on her bike and ride away with her brother.  I wish I could sign her up for all of the camps she wanted to go to this summer.  Honestly I just wish she could walk the two steps from her walker to the car door at the grocery store parking lot without falling and smacking her face on the concrete, but she can't. 

Why is it that even the medical interventions that are meant to help her seem to cause even more challenges for Kaitlyn???  I really can't answer that, but I can tell you this.  Kaitlyn has remained incredibly positive through all of this.  If she's frustrated with the loss of mobility, she's not showing it.  She's using her crutches and walker when she can, and asking Chris and I for help when she needs it.  She's finding happiness in all the things she loves including reading, swimming, and spending time with her friends and family.   She doesn't spend any time feeling sorry for herself.  She doesn't complain.  She doesn't dwell on the pain or the difficulty.  She is positive.  She is happy.  She is amazing.

Hopefully by the time I get around to writing the next post, Kaitlyn's mobility will have improved.  She'll be getting ready to start a new school year, and we are hopeful that by then she'll be able to walk more independently.  Until then I have no doubt that she'll keep smiling, giving me all of the motivation I need to keep smiling too. 

Here are a couple of pictures from our vacation.  I'm sure you can see by the look on her face that no matter what challenges she may be facing in a given day, there is always something to smile about...

 

  

Independence

Independence. Defined as "Freedom from the control, influence, support, aid, or the like, of others".

Well, independence certainly sounds like something we should all strive for, don't you think? As parents we all do our best to start teaching our kids to be independent at a young age, so that they don't grow up to be completely inept at developing relationships or living in the "real world" when they leave our houses someday. The goal of independence is the reason we teach our kids to use utensils to eat, dress themselves, and brush their own teeth when they're toddlers. It's something that is expected of us as parents, and something that if we didn't do would certainly lead to ridicule and scorn from the rest of the world.

While promoting independence sounds good in theory, it's not always so easy in practice. You see when you have a child with cerebral palsy, allowing independence is both necessary and incredibly difficult. I have said this a million times...Kaitlyn is fiercely independent. She has been that way literally since the day she was born. She's a fighter, she's tough, and she is incredibly driven. She wants to be as independent as any other 8 year old out there, and I want that for her. I have spoken to older kids and young adults with cerebral palsy, and every one of them has told me the same thing..."Don't treat Kaitlyn any differently than any other kid. Don't do things for her. She has to learn to do things for herself. Don't coddle her." I have heard this from both sides - kids whose parents encouraged independence, and kids whose parents did way too much for them. They all agree that allowing Kaitlyn to do things on her own to the extent that I would for any other child her age is imperative.

I have taken this to heart, and Chris and I agree that fostering independence is the best thing we can do for Kaitlyn. To squelch her independent nature would undoubtedly do more harm than good. Having said all of that, I'm finding it more and more difficult to stick to the plan. What kind of mother would stand by and watch her child fall (literally fall) sometimes a dozen times a day and not help her up? What kind of mother would be shopping in Target, allow her child to stumble, crashing first to her knees then toppling over onto her hip/shoulder/temple, and not lend a hand to help her up? What type of mother would see her child get knocked to the ground while playing soccer with her friends and not even ask if she's ok? Me. That's what mother would do all of that.

You see Chris, Kaitlyn and I all know a few important things:

1. She's going to fall. A lot.
2. She HATES when people make a big deal about it.
3. Unless she's really, truly, hurt, she wants no mention of the fall. She wants to get up ON HER OWN, and move on.

While I know that allowing her to "take her lumps" is the best thing for her, some days are just harder than others. I really could do without the glares from the people in Target who look on in disgust as I stand by and watch Kaitlyn painstakingly roll from her side to her belly, get up on all fours, move her hands from her feet to her knees, and finally walk her hands up her legs as she gets to an upright position. I've actually gotten pretty good about not letting what a complete stranger thinks bother me. What hasn't gotten one ounce easier is fighting my instinct to jump in and help her whenever I can. What all of the people watching these situations unfold don't know is that while I can fire back a steely glare right at any one of them, on the inside my heart is breaking, each and every time.

Recently Kaitlyn had her annual dance recital. This is by far the single most anticipated day of the year for her. She not only loves to dance, but her favorite place in the world to be is on stage. She works hard all year to learn her recital dance, and bounds onto the stage with all of the enthusiasm in the world. This year her tap class did a dance set to "Anchors Away". They were so cute coming onto the stage all decked out in their sailor costumes. As the dance started, I couldn't help but notice that Kaitlyn was smiling from ear to ear. I'm always amazed at her bravery. She has admitted that being the only dancer with a walker is hard, but she gets up there and it gives is her all.

About half way through the dance, Kaitlyn let go of her walker to perform a little spin. When she got back to her starting position, she reached out and grabbed one side of her walker, but missed with her other hand. She fell to the floor, and there was an immediate audible gasp from the crowd. As much as I wanted to run up and help her up, I sat still, held my breath, and hoped for the best. While another child might burst into tears, or run off the stage, Kaitlyn did just the opposite. She pulled herself back up, and managed to finish the dance with a smile on her face. My heart broke for her when it happened, but I couldn't have been more proud of how she handled it. Here's a short clip from her dance. You'll see her smiling face dancing her little heart out. You won't see her falling - that's the least important part of her performance...



On our way out of the auditorium that afternoon Kaitlyn was showered with compliments from complete strangers, kids and adults alike telling her what a great job she did. In the car on the way home Kaitlyn asked me if everyone was upset that she fell. I told her that nobody cared that she fell, but everybody cared that she got up. It's amazing to me that an 8 year old girl can can teach such an important lesson to the hundreds of people watching her that afternoon.

"The greatest accomplishment is not in never falling, but in rising again after you fall. " - Vince Lombardi