Tags » CHARGE Syndrome

I am (Insert Adjective Here)

As someone with a back up plan for every back up plan I already had, I could have never planned or prepared myself for where I have found myself today. 585 more words

Charge Syndrome

Summer Flies By!

Memorial Day weekend was a mess… We had Kodiak in ER because of a racing heart. It ended up both my boys had strep. However, it was not figured out until Tuesday. 482 more words

Kodiak My Little Grizzly

When platitudes start to make sense

When the Peanut was born, people would tell me all number of platitudes. The most common from nurses and hospital staff was that the Peanut “is not her diagnosis”. 327 more words

Special Needs

Something to smile about

In the last 15 weeks I have felt worse than I ever thought possible. When I think back to those first two weeks in the hospital I remember walking as if my legs were filled with lead. 395 more words

Special Needs

Weekly Photo Challenge: Containers

It has been a while since I have posted for the WordPress Photo Challenge.  When I saw the subject earlier today, I started going through in my mind of where I might be able to find something to represent a container.   760 more words


How it feels when your life makes other people thankful for their own

Prefix: I wrote this post (including the note at the end) 10 weeks ago when the Peanut was still in the hospital. I don’t feel this way now. 1,658 more words

What's Wrong With Our Baby?