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Wednesday, April 13, 2011

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.


  1. Beautiful words. Charlotte is in my thoughts, always. And I have felt much the same way about Daphne. In the beginning, I would wonder if today would be the day when a Dr. would bring the news that would be more than I could handle. More than she could overcome. Every little milestone has come along with lots of hard work. We don't take anything for granted. I know you feel the same way. We have changed because of our little miracles. But it doesn't mean it's easy, far from it.

  2. Amanda, you are a great Mom, and if you weren't a typical Mom, I don't think you would have or could share with us your fears, and yes your worries.
    I sometimes think that what I fear or worry about, I attract. As hard as it may be, I believe its important for me to go back to the moment when my fears creep in. This moment is all I have and my only guaranty. The blessings that each moment thought of, helps me push the normal fears and worries away. I am always reminding myself to "Fear Not!".

  3. You know, Amanda, I used to worry about a lot of the same things when Jonathan was little. There were times I was pretty sure I had lost my mind--but then I'd look at him and realize that wasn't the case at all. Those "milestones" that take so much longer to reach are much sweeter achievements and you will cherish each and everyone of them--they don't just happen, they are a process (sometimes a long one, but always, always worth the wait)!!! One day I realized that Jonathan's future would be what WE made of it--and much like you, I refuse to just settle...I will always push for the best he can have so he will be the best that he can be. I refuse to conform to society's standards, as they just don't apply. Our kids only know what we let them know and they figure a lot more out than we realize! You already know that Charlotte is so special in many, many ways and that she has achieved so much--she is an amazing little girl with an amazing family. It's okay to allow yourself to have these "moments"--they are healthy and allow you better deal with what's in front of you. It does get easier as they get older...but we mature and get older, too, allowing us to face the world proud and smiling! So keep standing tall, being proud and smiling--it is all worth it!!!