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World Rare Disease Day 2015
Today is World Rare Disease Day. CHARGE syndrome is on that list. I hadn’t heard of it before our diagnosis, like almost every one else. It’s scary to be told your child has something no one even knows the name of. It gives you a feeling of being alone that I can’t explain. That is until you find your people. The other people in world who “get it”. And there are a lot of “us”. CHARGE syndrome affects 1 in 10,000 births worldwide. Visit Noah’s News and the CHARGE syndrome foundation for more information. There are over 7000 distinct types of rare diseases and syndromes, and more are constantly being discovered. There…
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So why did I go on Hiatus from the blog…again?
I was back on track and doing pretty well keeping people up to date with life and pregnancy and all things us. Then once tests came back and gender was revealed I felt weird talking about and celebrating “normal”. It was like I was taking away from our Noah journey and it felt weird to me to make any sort of deal over the health of O. As if any celebration was a kick in the pants to Noah. I know, couldn’t be further from the truth but it was a strange place to be in. I love Noah and every thing about him and the memories I have of his…
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Noah is 1!
Today Noah turns 1. I can’t believe it. It’s a lot easier to put pictures together than the words (still working on it). But I wanted to share because I’m so proud of my little man and every thing he is becoming. It’s been a hard year but he amazes me and everyone who knows him every day! Here’s the link of Noah’s birth story I wrote while we were still in the Children’s Hospital last April: Birth Story The entries I wrote about this amazing man and difficult road we were given: Some of the Past Year with N Happy Birthday, Noah! We love you!
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Rubber Duckie…
…you’re the one… The one Noah was hearing in the bath tub tonight. With each little squeak he would laugh and laugh. Then I realized, he is HEARING the duck that isn’t very loud without his hearing aids in. WTH. How is that even possible? But I’ll take it and enjoy every minute with every little squeak and giggle in shock and awe.
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Did you know I have a sighted child?!?
Because I did. I do. But hearing those words come out of the opthamologists mouth last Thursday was enough to make J and I well up. Numerous times. We knew Noah could see and his vision has really developed in the past month! He is a rockstar afterall! But just hearing it from his specialist validated what we have been seeing at home. But she kept saying, he’s definitely sighted and everything he’s doing is typical for a 6 month old. I should have recorded it so I could listen to it at anytime. Typical. Sighted. Music to my ears. (Sure he’ll have some deficits & will eventually need glasses…