Whew! *puff puff* That's me, blowing the dust off.
It's been awhile! And it was a while between the last couple, too - that's what happens as a completely physically dependent child gets older. Around here, anyway; during the day, I'm the sole entertainment and care provider, so by the time night rolls around, all my creativity has been sucked into a sorta large six-year-old, and there's nothing left for my poor, neglected blog.
That's right, I said SIX! Our little miss Lucy is hardly little anymore, and has officially moved into two-hand age tallying. She will be starting kindergarten in the fall (she loved pre-K so much we had her complete two years' worth) is still full of sass, and can somehow show it even more! She loves her dolls, is still favoring classic Disney movies over the fancy new animation, and continues to adore my cat-in-heat singing (we'll see how much longer that lasts!) Daddy maintains his position as the apple of her eye, naturally. Lucy is now fully bipap dependent, and while we are looking into traching, she's happy with her respiratory support.
When Lucy was diagnosed, and I'm sure I've said this before, I didn't cry. I stood there, stone-faced, while a geneticist told me that my baby was going to die before she turned two years old, and I bounced Lucy in my arms, and I didn't cry. I suppose I was in denial. Oh, I bawled when she was hospitalized for testing - sat up nights rocking her as she slept, sobbing, praying, begging for it not to be anything serious, promising the world if it wasn't. But it was.
And I guess I just refused to accept that. Refused to believe that any person on earth could tell me what would be with Lucy. Because, news flash - no one can. No one can tell you, with absolute certainty, what will happen to your baby - happen with their life - whether they're medically fragile or not. They can guess what may be, they can predict what will probably be, but they can't tell you what will be. God can do that, but He's imparted this beautiful gift called hope, so He's probably not going to share that information with you.
Lucy is proof that no one can tell us what will be. And I have never once regretted being in denial. I'm proud of it. I deny that anyone can tell me how my child's life will play out. Apparently, so does Lucy.
