The Future

I'll be honest.

I worry about Charlotte.

I worry that her next appointment will be the one with the horrible news. I worry that they missed something at the last appointment. I worry that the doctors are watching for things but not telling me. I worry that I am missing something. I worry that she'll never talk, never walk, never participate in life the way that a mother wishes for her daughter.

These worries are not all encompassing. It's not what I see every.single.time I look at her. Rather, they are the fleeting thoughts that rush through my mind when someone says, "Next year, at this time..." or when someone mentions a milestone to meet or a hurdle to jump over.

Next year at this time, what? Will she eat? Will she crawl? What will be her next diagnosis? Will she walk? Will she still be sitting there smiling at us with all her tubes and wires? Will she be off of the dang oxygen? Will she be able to talk? Sign? Pick up things with her fingers? Bang two objects together? Shoot, will the girl roll over?

How about in five years? Will she be able to go to sleep overs? Will she go to school? Will she still have a tube, oxygen, medications or CPAP? Will she be done with therapy? Will she have braces or a wheelchair? And in ten years, or fifteen, or twenty? What then?

Now in reality, I know that most of these questions are silly and not applicable. And I know that if she doesn't do any of these things, we'll be just fine. We'll make it. And so will she.

I also know that Charlotte is doing so much better than we really have the right to hope for. She's alive, and anything she does over and above simply staying alive each day is a miracle. Seriously. She had an 11% chance of survival with a moderate to severe disability. She beats the odds every single day.

And yet, I struggle, as I fall asleep each night, thinking of the things that could go wrong. The things she might miss out on. The moments she won't have.

Maybe we all stay up at night worrying about that. Because, isn't that the struggle of all parents? We want everything for our children. Full term, autistic, healthy, disabled, or angles in heaven, we all just want our children to have it all. Sometimes we don't get it, sometimes our children, just don't get it all. It's coming to terms with that, and figuring out how to adjust to reality that makes us parents I suppose. 

But in the middle of the night, with a nurse downstairs, a feeding pump alarming and a CPAP machine whirring, those worries seem so much larger, so much more intense. So much more personal, isolating, and terrifying.

I guess I'm just trying to say "thank you." Thank you to this community of Charlotte supporters for getting me through the night. For giving me the knowledge that when it all comes crashing down (as life inevitably does), Charlotte will have more than me to hold her up.

Because you might not be her parents, but you are her future. That knowledge sure does help me sleep.