Friday, November 9, 2012

From small beginnings.

First, I just want to say that Adam & I are completely in awe of what our friends at Chasing Zebras have made happen the past couple of days. We are just so touched that you would take the time to send special wishes from all over the world. A group of people in South Korea today sent Addi a birthday card.... I mean, how incredible is that? I can't say thank you enough. I don't feel like that fully explains the bursting that my heart is doing! I pray that God's work is being done in your life, each and every person represented on our page... almost 1700 of you. And growing everyday.

Tomorrow, I will have a special post highlighting some of Addi's special moments over the past 2 years. She has made us cry, brought us to our knees, devastated us, awed us, impressed us, loved us..... and most importantly, TAUGHT us what life is really all about.

When you look at her, you see normal. You can't see the hundreds of blood draws. Its probably hard to imagine this spunky little girl with the huge smile and even bigger heart lying in a hospital bed lethargic and incredible sick. But that's what this terrible disease has done to her too many times.

Many of you joining our page today see a beautiful healthy looking little girl. She hasn't always looked that way. And unfortunately, her battle is only just beginning. Even though we finally have her safe and healthy nutritionally (that is what you are seeing) on the inside, her body is always in an energy crisis. Her brain has been affected in ways we can't understand fully yet. But the point of all of this is to tell you that disease like this can hide all the same in babies that look horrible sick and the perfect healthy looking toddler. This page is about awareness. Not just for Mito or any other one disease. But for anyone who is facing the unknown. You don't know what it looks like. There is no end to us hearing "but she looks so good!" And she certainly does. And it breaks my heart even more knowing that her life will be spent with people not realizing the severity of her illness and other kids like her. People judge what they don't understand.

So we are here to help defeat the perception of invisible illness. Autism, Mito, Cancer, Down Syndrome, Trisomy, and many more... learn about them. Be accepting. Be kind. Teach your kids to be kind. All any special needs parent wants is for their child to be celebrated for their own merit. Parenting is sadly often a competition.... Did your baby sit yet? How many words do they know? When are you going to potty train? When your child is sick or not developing typically, you stop anticipating those normal milestones and start smiling over the inchstones. And having done it both ways, typical and atypical..... I've slowed down. I've enjoyed their accomplishments so much more because they felt like victories after how much work we put in! Addison has worked hard to get to where she is and we are incredibly proud. I can't wait for tomorrow, it really is a day that seemed sometimes that we might not ever see.

1 comment:

  1. Happy 2nd Birthday Addison!! You are one strong girl!