Sometimes, life is just plain tough...

I know - it's been two months since I've posted.  I remember there was a time when I was posting often with all kinds of news.  I've always had three goals for the this blog...

1.  Share Kaitlyn's story of navigating through life while managing the challenges of living with cerebral palsy.
2  Inspire others by showcasing how Kaitlyn's positive attitude and fierce determination help her to overcome many of life's challenges.
3.  Be completely honest. 

The problem I'm having lately is reconciling that currently there seem to be tons of challenges, but very few stories of overcoming anything.  If I want to remain completely honest, then I know the tone of my writing will be sad, frustrated, and maybe even a little defeated.  Like Kaitlyn, I'm someone who tends to think positively and can usually find a silver lining in even the most dire situations.  In the interest of full disclosure, I have to say that these days I'm feeling less like that person, and more like a bitter, ticked-off, really sad mom.  I look at her and my heart breaks.  I'm tired of her having to live with this condition, and I hate the fact that I can't fix it.  So those of you who like to read this blog to be lifted up, you may want to stop right here.

Things have been tough lately.  However, one huge upside is that Kaitlyn responded really well to the injections she got over the summer.  She is much looser, and she is falling much less than she was in the spring/early summer.  She'll need to have the injections repeated in early 2013, but I'm encouraged to see how well she's doing. 

As for the tough stuff, I almost don't know where to begin.  First, the doctors are talking to us an awful lot about what the next few years may have in store for Kaitlyn.  She's 8, and evidently the pre-adolescent years (9-12) can be quite difficult on kids with cerebral palsy.  If we thought that ages of 7&8 were hard on her (which they were), the next few years will most likely be even worse.  The growth that she'll experience will probably result in increased muscle tightness.  With her muscles being so tight, they will not be able to stretch with her growth rate.  That in turn may cause her bones to twist and turn because her muscles can't keep up with the bone growth.  If this happens, she will need a miserable surgery to break and reposition the bones that get twisted.

Within the last year she was diagnosed with scoliosis.  What was originally a "mild" 20% curvature of her spine has quickly progressed to a "concern".  If it continues in the direction it's going, she'll need to wear a back brace to straighten/support her spine.  So this poor kid who already uses a walker, walks differently than everyone else, falls in front of her friends all day long, is the only kid at school to wear a seat belt on the bus, sit in a special chair in class, sit in a different special chair in the cafeteria, and wear leg braces will now have the distinction of wearing a big old back brace over which fitting all of her cute clothes will be virtually impossible.  That's just the emotional component of this...never mind the pain and long-term impact this will have on her physically.

Lastly, Kaitlyn is suffering from SEVERE acid reflux.  She's had an endoscopy, and has been on 4 different medications, but nothing seems to be working.  It's impacting her whole life.  It's really hard to get through a school day with a stomach ache and acid reflux.  She missed out on amusement park rides this summer because her stomach hurt too much.  Just today she had to leave a movie half way through  because her reflux was so bad :(  It's just plain miserable to live with this.  The fact that she now has to deal with this on top of everything else just seems cruel. 

So that's it.  There's the update on Kaitlyn.  At the very least after reading this I hope you can understand why I'm having such a hard time.  I just don't understand why the sweetest, kindest, most loving person I know has been saddled with this affliction.  I guess sometimes life just isn't fair.  What's most amazing to me is that Kaitlyn manages to keep smiling, even through the toughest times.  Hopefully I can learn to smile too by watching her example...