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
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...
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