'I do feel sad sometimes, but Kate isn't'



Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends—and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.