I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers. He is here to spend a few hours with kids like him, boys and girls who have siblings with…
This morning I will be speaking at a conference for parents of kids with special needs about stress. It’s a hot topic these days. Americans are often described as the most stressed people in the world and parents of kids with special needs or from hard places are often especially overwhelmed. In fact, a study of moms raising children with…
Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.
I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.
Children are being discriminated against and denied access to special education services they need to because their families are not equipped to fight for their rights. Schools have gone to such extreme lengths to add red tape and made it so difficult for parents to request services that many are not able to navigate the system. Those who speak English as a second language or have limited education themselves especially struggle.
As we sat around the fire pit in the hotel courtyard and talked for hours, I suddenly felt my soul exhale. Every woman in that circle knew what it was like to hold your seizing daughter in your arms and pray she takes another breath. Every woman understood that strange mixture of devastation and relief that comes with a diagnosis. Every woman bears the scars of dreams that were ripped from her chest. Each of them understood the pressure of carrying this burden but somehow as we all shared our stories and shared the weight, it seemed to get a little lighter.
As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.