Tuesday, October 18, 2011

Emails from Strangers

Today I got an email from someone I don't know. This happens probably once or twice a month, someone finds our blog by searching for answers about their newborn with HIE or microcephaly or CP...sometimes, like this time, it's someone who knows someone who knows us. The funny thing is that no matter when I get these messages or what they say, it always seems like perfect timing for the perfect words. (God know our hearts, doesn't He?)

The one I got today was from a lady who went to HS with Brian's uncle. She told me a story about her aunt who has CP from being born premature. But her aunt was born in 1953 and things were a lot different back then for little special needs kids. They didn't have the services they have now. There weren't laws and policies in place to protect them and to make sure they got what they needed. Instead, it was common for doctors to recommend that these children be institutionalized and that the families just forget they ever were born. And sadly, that's what many families did. But this family was different. They had tried hard to have children and had many failed pregnancies. They were not about to "forget" their child, they had worked hard for this little girl and they were going to give her everything she needed, even if that was going to be more work.

She goes on in her email to tell me that her aunt walked for many years even after doctors said she never would. She talks about how her grandparents created their own homemade adaptive equipment so that she could feed herself. And when they were told she'd never read or write, her grandmother was determined to prove everybody wrong on that point too. This child was loved and her parents worked hard to give her the support she needed to become what many said she'd never be!

But she doesn't fail to mention that there were also hard times. She tells a story about her grandmother ordering special shoes for her child and the man telling her they only come in brown. But little girls didn't wear brown shoes back then, they wore white ones. And when she was told she had no choice, the shoes were going to be brown, she felt so defeated that she found a quiet place and just cried. She cried over brown shoes, because it was that one little thing that finally broke her.

This story is so encouraging to me in a couple of different ways. First of all, it's good to know that sometimes the little things are worth crying over. Sometimes you fight and fight and fight for all the big stuff that by the time you lose on one of the little things it can feel more defeating than it really is. White shoes vs. brown shoes may not sound like a big deal to you, but when your child is already so different from everybody else, the last thing you want to hear is that they can't have one more thing that every other child gets to have. It's not really silly at all, because you know in your heart that it's only one thing in a long list of things your child will not get because she's "different."

The other encouraging aspect of this email is that it serves as a reminder that Sadie is only 1 and a half. She has a LOOOONG way to go and a LOT of time to get there. Sometimes I am tube feeding her because she won't eat and I'm thinking to myself, "she's never going to learn to eat, we're going to have this tube for the rest of her life probably." Then I read a story about someone who's child was tube fed for a decade (yes, 10 years!!) and now eats and drinks totally independently with no issues. That's a long time...a lot longer than the 5 months we've had the tube. And I read stories like the email I got today about how they taught their child to walk and to read and I think to myself, "oh yeah, we have time, she's only 1 and a half!"

Look how far we've come just in a year! A year ago Sadie screamed every car ride. A year ago Sadie was still nursing! A year ago, Sadie didn't have any teeth!! A year ago Sadie was sleeping in bed with us and had to be held to take a nap. Think of what another year can do for us!

Sure, we have a long ways to go...Sadie can't even sit independently yet, but we have a long time to get there. My goals for Sadie aren't lofty and unrealistic, but maybe I set them low to increase the possibility of reaching them and surpassing them. And when I have days when I feel like all is lost and my kid is never going to do anything but sit and scream her head off, those will be the days, surely God will have somebody send me an email and remind me that my efforts aren't wasted and someday this little girl is going to have an even more amazing story than she already does.

1 comment:

  1. Inchstones are awesome and often fought for with more vigour than any milestone :)
    I am sure Sadie will continue to impress and inspire you!