Fourth Grade... Ups, downs, drama and flip-flops

Good grief - I can't believe it's been an entire school year since I last posted.  Thank you to those who reached out to me to see how things are going.  

Unbelievably Kaitlyn is finishing up fourth grade.  In the interest of full disclosure, I should start be telling you why I haven't posted in so long.  It has always been my goal to speak honestly and keep things positive.  Kaitlyn has always been such a happy girl that doing both was easy.  However, this past year has been her most challenging yet.  It's hard to share how sad it has been to see her face the physical and emotional challenges that she has this year, but here goes...


This year the gap between Kaitlyn's abilities and those of her peers has widened and become more evident to her.  She is beyond frustrated with her body and its refusal to do what she wants it to.  The cruel reality is that her mind knows exactly how to move, but her body won't respond.  Here are some quotes from the last few months:

• "I feel like a prisoner in my own body."
• "Why did God pick me to do this to?"
• "I've already lived with this for 10 years.  Do I really have to have cerebral palsy for the rest of my life?"
• "Do you think I'll find a husband who loves me for this (pointing to her brain), and not this (waving her hands over her legs)?"
• "I wish I could do everything like other kids like run and ice skate."
• "If I didn't have cerebral palsy I would play lots of sports."
• "How am I going to take care of my kids, do laundry and drive a car when I'm grown up?"
• "I hate cerebral palsy and I want to punch it in the face."

I can't tell you how much I want to punch cerebral palsy in the face too.  

Kaitlyn has taken dance since she was in kindergarten.  She has always loved it, but a couple of months ago that all changed.  She has had the most amazing dance instructors I could ask for.  They make all kinds of modifications so that she can dance with the rest of the class, and they always cheer her on.  Unfortunately Kaitlyn is her own worst enemy.  After one particularly frustrating dance class, she told us that her brain knows exactly how to do what the teacher asks, but then she looks in the mirror and her legs are all twisted and don't move the way she wants them to.  It all came to a head when her class had the opportunity to show off their recital number to a bunch of other classes, including "the big girls" who she really looks up to.  In the middle of the number she took a bad fall, and really hurt her knees.  She tried to get up but couldn't, and had to wait for a teacher to help move her to the side.  She cried hysterically the whole way home that night.  She was terribly embarrassed and said that she doesn't want to dance anymore :(

Again this year she asked Santa "to make me a regular kid".  I can't begin to explain how difficult it is to explain why Santa, God, or anyone else can't take CP away.  

On the upside she is definitely finding some activities that she really enjoys.  She joined the chorus at school this year, and also participated in the drama club which she absolutely loved.  Of course she didn't want to use her walker or crutches on stage, so the staff worked extra hard to see that she didn't have to move around too much and that she had some props to hold onto.  It was just awesome to see her up there acting and singing her heart out.  She told me later that she thinks that people in the audience didn't know that she has cerebral palsy which made her so happy.  

The latest CP related frustration was just last week when we were out shopping for summer clothes.  Take a look around at any girl 3 and up in the summer, and you'll see that they are all wearing some type of flip-flop.  The stores are littered with blinged-out, flower and jewel embellished, brightly colored flip-flops that any little girl would love to wear.  While holding a particular pair covered in pink glitter, Kaitlyn turned to me and asked (for the 6th year running) if she could get some flip-flops.  How on earth do you tell a 10-year old that not only can't she wear the fashionable sparkly flip-flops, but that she'll need to wear her bulky Saucony wide-width sneakers with the extra velcro so that they can fit over braces?  This is not exactly the look one goes for when putting on all of the new summer sundresses in your closet.  Further, she'll probably never get to wear flip-flops, high heels, or other "fancy" shoes because she simply can't walk in them without tripping, slipping, falling and hurting herself.  Ugh.  

So, we are doing our best to continue to encourage Kaitlyn to look at the bright side and focus on all that she can do, and not what she can't do.  She has an awesome new pen-pal who deals with many of the same challenges she does.  She has some amazing friends who overlook her CP and just see her for her.  She plans on joining chorus and drama club again next year, and she has become the world's most prolific loom band bracelet maker. She has a newly donated Segway on which she now cruises through the mall, down a bike path, and through the neighborhood.  She definitely has a lot of great things going on in her life, but they still don't take away the weight of living with such a debilitating and often painful condition at 10 years old.  

Here are some pictures of Kaitlyn.  It's crazy to see how much she's grown since I started blogging about her!

Disney Trip:

Drama performance:

New haircut:

Riding her Segway with Connor: