When I think of that time now, I think of hands. Hands working for us, some belonging to people I’ve known for years….others were strangers to me – nurses whose names I could barely keep straight, social workers, doctors, neighbours I knew just by sight. Hands folded in prayer…hands dialing phone numbers as our news spread….wherever I went, it seemed I was never alone. I felt cradled, loved; led by so many that it became one, one love, one light, leading me home.
–Jennifer Graf Groneberg, from the book Gifts, talking about when her baby son was diagnosed with Down syndrome.
When I became a mother 20 years ago, I needed hands offering support, too (even though my first son was a ‘typical’ child). I have no sisters, I was a relatively young mom, and none of my friends were having babies yet. I joined a La Leche League group, and belonged to a national organization called Feminist Mothers at Home. Those groups offered me the opportunity to meet like-minded mamas who eventually became my friends. I took long walks pushing a stroller from our housing co-op in the river valley to meet up with a painter friend who I had met at La Leche. I travelled to Ottawa to meet up with my other feminist mother friends. When my second daughter, Ella, was born, I met up with mamas again at La Leche in my new city of Winnipeg, and then slowly started meeting moms when my eldest began school.
Someone wise once said: with children, the minutes tick by very slowly, but the years go by very quickly. Those moms helped fill those ticking minutes.
The trajectory of our family’s life abruptly changed ten years ago when my new baby was diagnosed with Down syndrome. I found myself utterly and painfully alone, sitting on the couch, holding my boy. I attempted a Mom and Baby Yoga class, but fled after one mom asked me why I didn’t get prenatal testing. I tried a music class for moms and babies, but another mom’s joke about ‘slow kids’ hurt so much that I never went back.
One well-meaning nurse said to me: ‘You’ll get used to it. You’ll get thick skin.’ I didn’t want thick skin. I wanted my dreams back. -Jennifer Graf Groneberg, again in Gifts.
I had to create, from scratch, a new dream for my son, my family, and me. I slowly found my new community of moms. I was connected with a friend of a friend who had a young daughter with Down syndrome. I started up an informal moms group, for moms who had babies with Down syndrome born the same year as Aaron. I built the Visiting Parents Program with two other moms – really, in a desperate attempt to ensure that other moms (and dads) never felt as lonely as I did the few first weeks of Aaron’s life.
I’ll never forget the first time I met that mom who had the three year old daughter with Down syndrome. Aaron must have been two months old. I was shaking with nerves when I arrived at her house. She graciously welcomed us, and immediately asked if she could hold Aaron. Her face lit up as she held him, and she said, Oooooh, this makes me want to have another baby. I thought she’d gone mad – my baby had Down syndrome, I thought – why in the world would you want that?
But this mom was three years into her journey with her daughter, and she was so much wiser than fragile, vulnerable me. Watching her daughter sit on the playroom floor and flip through board books gave me hope for the future that my son would one day read (and yes, he does read). In her unabashed delight for my son, I knew that everything was going to be ok.
Other moms showed me how to love my boy, and most importantly in our world, how to accept him too. That’s a lesson that is not taught by professionals. We can only learn that from each other, but we need opportunities to meet. We have to be creative in the ways we connect families together who are travelling on unexpected paths – that might be prenatally, in the hospital, through Early Intervention Groups, or by word of mouth.
Peer support works – just give us the chance, and we will take it from there…