Brian and I have spent 16 Christmases together and I can’t remember a single one where we gave one another gifts. I’m also pretty certain we’ve had a home with no tree more often than we’ve had one. You see, I love the concept of Christmas — being close to your loved ones during the... Continue Reading →
Defying the odds
There's a common narrative I hear nearly every single day from kind hearted strangers or people we know. "She'll defy the odds, just you wait." The narrative, at the core, is the same. "Don't think negative, think positive!" I think the intent is to encourage us, to bring us out of a place of darkness and sorrow and re-direct us to some more light and happy place. Because, without realizing it, as a society we equate disability with sadness and darkness, but "normal development" with achievement and positivity.
Send help. She will only eat my food.
One of the things I was strangely looking forward to in parenthood was our future child stealing food off of my plate. Then when we got Eloise’s diagnosis and saw many kids on feeding tubes, we realized it might not ever happen. Then when we discovered Eloise had severe food intolerances at the beginning of... Continue Reading →
22 Months: Putting ourselves back together again
I had been pretty good about writing weekly updates about Eloise, then they became biweekly updates, then monthly updates. Then I went back to work and they disappeared altogether. But I hope to begin them again because it always helps me celebrate and savor all her gains. If you haven't been following, gosh it's been... Continue Reading →