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Donna Thomson

Cyber-Friendship, Love and Grief: A Reflection on my Online (Lifelong) Friends

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Cyber Friendship, Love and Grief
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:
Five and a half years ago, a tiny precious boy was born to two broken people. He came with no instructions and a body that often failed him, leaving us feeling determined, yet helpless at the same time.

We embarked on the journey of a lifetime with this boy. He healed our brokenness with his spirit, he inspired us with his courage and he brought hope to families and children and educators and doctors and therapists and more without ever uttering one word.

I never in a MILLION years thought I'd be writing this.

Today, Ed and I are holding Gavin's hand as he takes a new journey that doesn't include us.

I am heartbroken for Kate, for Brian, her husband and for sweet Gavin. There, by the grace of God go I .... go we. Rest In Peace, Gavin - you are loved by many like me, who never met you.

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  1. Earth Mother 2 Angels's Avatar
    Donna ~ When you posted this on your blog a year ago, I visited Kate's blog and began reading about her life, pregnancies, and of course, Gavin, and his little brother, Brian.

    Gavin's organs were harvested for donation, and Kate raised awareness about organ donation. In Gavin's memory, she started a foundation, and people worldwide began donating to spruce up the waiting room at the hospital, and more. (It's so much, it escapes me now, but it's all there on Chasing Rainbows.)

    The day Gavin passed, Kate realized she was pregnant. So her first year of grieving for him was also filled with the anticipation of the birth of her daughter, Hope. She blogged through all of it, bringing the readers into her home, the hospital, the places they visited, and the progress with Gavin's legacy of charitable activities.

    Kate's blog drew thousands of followers, and she connected with so many parents, not just parents of special needs children. Her writing style is easy, readable, relate-able, and enjoyable.

    Like you, I lived through the dark ages, pre-internet, and longed for more contact with parents of special needs children. I was fortunate to live in a well-populated area, so I did know parents of children at my sons' schools, and we did develop a parent network to fight the school district on numerous issues.

    But, the internet has opened up a new world of communication, which means we can meet other parents, with children of all ages, with a range of diagnoses among them, and we can share information, experience, and our emotional roller coaster lives to help each other and ourselves.

    We have BrainTalk to thank for our friendships. Although most of our CN members have drifted off to other venues, BT/CN will always be the Mother Ship. Thank you, Donna, for staying on deck with us.
  2. Donna Thomson's Avatar
    Hi Rose, Yes, I remember your comments on my original post - it's funny and sad to think how the internet has changed the way we support each other online. Some things are better and some aren't. I miss the longer notes (everything on other social media platforms is just short sentences). And I miss the more intimate feel. That said, there is a lot I like about changes in making research possible and finding others who share our parenting experience. I'm glad to still be here - with you! xo

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