Bloom is a fantastic special needs, medically fragile, medically complex parenting blog from Holland Bloorview and edited by my friend Louise Kinross. (Incidentally, if you like them please consider supporting them as they run solely on donations).
This is a recent article that was posted, and I wanted to share it with you here and let you know my thoughts about it.
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 favorite color is (but she can tell you her name and how she is!!). Some (few) make an effort to include Kate, but playdates, birthday party invites, get togethers with the girls is 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 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.