Saturday, October 29, 2005

There is a degree of uncertainty with everything-freak accidents happen everyday; car crashes, sudden strokes, fatal reactions to flu shots. So I don't feel so bad for myself--or so special--to be raising Charlotte.

Charlotte turns 4 months tomorrow. She is 11 lbs, 5 oz. She can see, hear pretty well, eat very well, coo, cry, rock her hips around, suck on her hands, smile, and roll from her side to her back.
She cannot pass most of the developemental milestones she "should," --pass a standard hearing test, hold her head up, breast feed, scream as loud as most, keep her oxygen saturation up without help, or go more than a week without some sort of doctor's appointment.
We don't know if she'll ever walk, talk, laugh, be potty trained, eat solid food, have natural friends, dress herself, or live very long.

But does any parent really KNOW their kid will?

Charlotte wasn't "supposed" to survive to full term. When she did that, she wasn't supposed to be born alive, take her first breath, live more than a couple hours, live without a feeding tube, survive her first week, or require medical services to "improve her quality of life". After all, she wasn't supposed to have a life at all.

So four months in, she has been admitted to the hospital twice, coming home the first time on long-term oxygen, and the second time with a IV line to her heart and antibiotics. When she doesn't cry or cough for a few hours at night, I wonder. I walk into her room
s l o w l y-

holding my breath-


But then I know most first time mom's do that. At least sometimes.
And yet I've never been happier. I tell everyone she is an easy baby; sweet, content, a great sleeper--apart from the whole health thing she is perfect.
Charlotte has partial trisomy 16, partial monsomy 9. Therefore she shouldn't be alive.
But then there are plenty of normal kids with normal chromosomes who for some reason fall behind, or never walk, whatever. So who's to tell her what she can and cannot do?
There's uncertainty. But it's awfully exciting.