A Journey Now Less Lonely

One year ago today, we shared with the world that Evie has CHARGE syndrome. It was a scary day for me. What would people think of Evie now? Would they put her in a box of limited possibilities? It was a secret I had guarded for months and was very hesitant to release to the …

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Thank you, Grandma

My grandmother died Saturday night, and although you might not know her name (it was Lillian), if you’re a special needs parent, you owe her your thanks. When my Aunt Patty was born in 1952 she was a strong eight pound baby, but when the soft spot on her head closed too quickly, she started …

Resolved

I wanted to let all my readers know that the issue of my post being copied is now resolved.  It was, as I was hoping, an innocent mistake, but was complicated by both her readers and mine feeling the need to step in and defend us.  While we both appreciate the loyalty, it did amplify …

Worth the Wait

When Evie was first diagnosed with CHARGE syndrome and we were told she was more than likely deaf and blind, one of the things I wondered was whether or not I would ever hear her call me Mommy. Maybe that's silly, but I grieved all sorts of little things that definitely didn't feel silly at …

The Diagnosis is Not the Person

Ty and I have been talking lately about how incredibly bad Evie looks on paper. There's a reason every single person who has read Evie's list of diagnoses is shocked to no end when they actually meet her. She's NEVER what they expect. Her long list of past and ongoing issues cannot capture her spunk. …

We’re Not Special Parents

Special kids go to special parents. I hate that cliché. I know it's supposed to be a compliment, but I think this statement does more harm than good for the parents, the kids, and the special needs community as a whole. First off, it's flat out not true. Special needs kids are born to all …

Cue Sigh of Hope

That's my new phrase for when we get good news. We don't really do relief around here since we've had so much good news taken back again, but we do appreciate when HOPE is given. We met yesterday with an Infectious Disease doctor to discuss Evie's latest bloodwork and he was very optimistic. She does …