Tags » CHARGE Syndrome

Everybody poops (for the most part)

We are almost at our 2-year anniversary for Brandon’s appendicostomy (Malone procedure).

Brandon is 17 and has CHARGE syndrome. He is non-verbal, deaf/blind and g-tube fed. 199 more words

Appendicostomy

I need a break!

If it wasn’t bad already, things just keep happening. Just a few days after my last post I saw my other grandma for the last time in her little assisted living appertment. 1,656 more words

Kodiak My Little Grizzly

Surrounded by voices who understood

I dreamt about Eva last night.

In my dream they had brought her back 24 hours after she died. Somehow when they got her back to the hospital they realised it was possible to start her heart again. 966 more words

Special Needs

Without trying, or having to, or knowing it, she changed me

There are a lot of cliches, euphemisms and platitudes┬áthat get thrown around when something inexplicably tragic happens. People don’t know what to say, and they want to placate you with something. 1,209 more words

Special Needs

This perfect Eva shaped hole

I have written quite a bit about triggers over the last few weeks. Things that set me off. Things that turn a seemingly normal day upside down. 587 more words

Special Needs

She had nothing to prove

It’s amazing the little scenarios that shake me up. They are obvious to me, but so benign to others that I sometimes can’t quite figure out how to react in that moment. 1,348 more words

Special Needs

Avoiding the flatline

I wrote a few weeks back about meeting the couple at sign language class with the deaf eight month old daughter.

A couple of weeks ago they told me there was a high probability their gorgeous girl was also blind, or at least had visual impairment. 964 more words

Special Needs