3 years ago I took this photo. It turned out to be my most favourite photo I’ve ever taken. It’s a day I’ll never forget. I was past my original due date and I was still in the hospital hoping and praying I’d be home sooner than later. I was done with this surprise. I was done being separated from my family. I was done pumping behind a curtain. I was done having nurses, Doctors, residents, therapists, social workers coming through the door interrupting a nap/a phone call/lunch/cuddle time/a rare quiet “me” moment. I was done. All I wanted was to cuddle my newest son and be left the frick alone.…
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…
I feel like I’m on the verge, the verge of something big. Huge even. Life changing. ? Not sure. But probably. As I sit and await Tuesday, the day I’m starting the next step of this journey, I am anxious, scared, apprehensive, excited, and proud. Proud we made the decision to hope onto a plane, fly thousands of miles to meet people who I feel like I have known for all my life. We debated it for a brief minute many months ago and then jumped in with all our hearts. I’ve put a lot out there for “strangers” to see, but I wouldn’t have it any other way, and…
PTSD. Something can be said for all we’ve gone through. It’s given me severe anxiety in certain situations. It doesn’t take much to make me flashback. There’s the smell that is in the MH NICU. Well that whole wing. Since the entrance shares the hallway to L&D it has a smell and atmosphere all to it’s own. It instantly can throw me back into one of the darkest times in my life and make me an emotional mess. There are certain wings and rooms in ACH that does the same. Even certain Doctors. There are deodorants, soaps, hand sanitizers, and even certain food & drinks that make me relive it all. It…
Like a Boss.
For the first time ever he initiated steps backwards and sideways with our developmental aid yesterday morning. When we tried to replicate it that evening and well, he showed us alright! He walked forward!