Before computers, I relied on a monthly magazine for my connection to other caregivers. I was a new mother of a baby with severe disabilities and that magazine was called “Exceptional Parent”(now re-named EParent Magazine). I would rifle through the magazine in search of the page titled ‘Letters’ and there, I would read messages such as “Hi, my name is Sarah and my son David was born with cerebral palsy. But it’s not his CP that worries me. It’s his mysterious and very high nighttime fevers…..” These letters about symptoms, behaviors, strange rashes, rumors of new treatments and possible cures…. these letters were my lifeline to other parents who were something like me.
A few years later when the internet came along, I joined the first big disability online community called Braintalk Communities. I found my natural home in a forum called “Child Neurology” and there, I made friends. Rose, Lisa, Robin, Tracy, Micky, Deborah, Mary Grace, Paul, Tamie… these are just a few of the Braintalk people I call I real friends, even though I have never met them. But I write often privately to Rose and I telephone Tracy and Micky if their children are ill and I want to offer closer support. These online friends and I share a unique bond of our ‘exceptional parenting’ experience. Country of citizenship, economic status and political leanings are all irrelevant in our club. We have more important matters to discuss: our complicated children and our own experience as their loving nurturers.
I still talk to my friends on Braintalk, but there aren’t many of us left there. Most folks have gravitated to blogs or Facebook to talk about their challenges. But, for me, Braintalk is still that ‘safe’ room where I can rattle on about tube feeds, enemas and I can even spice up the conversation with the kind of black humor that my friends there will understand. I don’t mind the quiet of my old chat room.
Every so often in other online support communities, I see glimpses of deep and authentic online friendships between parents who have never met. I saw one yesterday.
Ellen Seidman writes a blog about her son called “Love That Max” – it’s a blog I visit often. Two days ago, Ellen wrote about her online friend Kate, another parent blogger whose son Gavin had become gravely and suddenly ill. Last night, this beloved boy passed away.
This is what Ellen wrote when Gavin was in ICU: I have never met Kate in person. And yet, I know her. Mom to Gavin and Brian, she blogs at Chasing Rainbows; we’ve exchanged comments and emails for years.She is the one who let me know Duke University was doing stem cell infusions, where Max got his. Gavin’s diagnosed with cerebral palsy, but Kate’s never been totally convinced that’s what he has. She’s done everything within her powers to help him, from making special nutrition-packed purees to setting up a hyperbaric oxygen tent in her basement. Gavin, who’s 5, recently started walking independently.
I know Kate. You do, too. Because she is any one of us, loving up her child, continuously finding new ways to help him and spreading the word about his greatness. And she does it with particular spirit and humor.
This morning, I decided to check on Kate and Gavin and I was devastated to read this: