Monday, August 20, 2012


Here's the thing about having a profoundly disabled, medically fragile kid.  Her life is really boring.  Well, boring with moments of sheer terror thrown in for good measure.  And while the lives of her parents have become a a whirlwind of trying to manage her care and everything else that it takes for the rest of the family to survive in this world, Anabelle's daily life is pretty mundane.  She rarely leaves the house except for doctor's visits.  She does not play with toys.  She can only see very bright lights.  She pretty much dozes off and on all day.

I wish there was more.  I've TRIED doing more.  This summer I took her to music classes when a local kids' music group, Makin' Music, offered her a free session.  And she really enjoyed it, and so did I.  It felt soooo good to just spend time alone with her, doing something non-medical.  The thing is, though, that we only went to half the classes, because she wasn't well enough to go out the other half of the time.  And while it was wonderful for the group to offer her a free session, I really can't afford the regular fees knowing I will probably miss a good portion of what I am paying for.  It is also a risk taking her among a crowd of children.  I would only risk it during the warm weather months, too many germs being spread in the cold, and any little bug can turn deadly for Anabelle quickly, since she can't manage the extra fluids in her body.

Banging (or eating) the sticks at music class

This summer was especially brutal.  It was WAY too hot for Anabelle to be anywhere but in air conditioning.  She cannot regulate her own body temperature, and it is very dangerous for her to be out in extreme heat.  She can easily get heat stroke.  So she mostly chilled out at home, listening to music, fighting a virus and sleeping.

We contemplated trying to go away for a few days as a family, but here's the thing: Anabelle doesn't sleep for long stretches.  Usually catnaps or 2-3 hour stretches at most.  At home, we have night nursing 7 nights a week so that my husband and I can sleep.  For the first year of her life, we did not have any help, and it was pure torture.  So when we started thinking about going away, all we could envision was night after sleepless night of no rest, and why would we pay a bunch of money to be miserable.  So we stayed home.  It sucks, but after talking about it for weeks, we couldn't figure any way to make it fun.

Anabelle during our beach vacation of 2011.  MISERY.  She hated every second of it.  She hated the heat, she hated the sand, she hated her wheelchair bouncing over the boardwalk.  Not really the adventurous type...

Every single thing we want to try to do always begins with the question, "Well, who's staying with Anabelle?  Is this something she can do?"  This change in our lives is probably the one that I hate the most.  Before Anabelle was born, I had visions of afternoons at the park with my two beautiful girls running through open meadows.  I've had a really hard time letting go of the freedom of movement that Anabelle's needs restrict.

I really want Anabelle to get the most out of her life that she can, I just don't know how to give her more.  The safest place for her is home, and I have another child, a business to run and a home to care for.  She listens to her music, we cuddle her and read to her, but on a daily basis, there is not much more we can give her.  I hope she is happy.  I hope she is satisfied.  I wish I could know, and I wish there were more, but this is her life.

Listening to some opera, her auditory entertainment of choice