Tales of a Yummy Mommy: The Weight of a Soul

I have to give props today to my fellow Parent Networking Group mommas! After coming together from all corners of Halton, we attending a two-hour long play group, at the Ontario Early Years Centre in Oakville. We then managed to take nine children, all under the age of 5 years old, out for lunch at a nice restaurant. The restaurant served yummy pizza, but it took a while for our meal to come because we didn't realize we had to walk up and order (my bad). The restaurant, Stoney's for those who know it, gets absolutely PACKED at lunch time, but we survived and all had fun with only an outburst or two.

We did what parents do best in hectic situations. We adapted and made do. When the host tried to squeeze us into the corner, we recognized our need for space and asked to move over there. We settled the kids into their seats, and split up what little snack was left from the morning between the six kidlets to tied over their appetites. We made sure the three babies had comfortable seating. We sang to the kids who got upset to cheer them up, and made up games to keep all the little minds occupied. We took turns watching the brood to order food, held each other's babes, and took all the kids to the bathroom (at once, because of course that's when they all needed to go). We made sure each family's order came together so no one would be left out, and spelled each other off to grab a glass of lemon-infused water. We divided and conquered. We ensured every kid had the kind of pizza they liked best, and shared that large chocolate milk into all those glasses after every kid wanted some, but the line was way too long to order more. We paused, and then burst into laughter when I asked Ariel where we were going in November. She went silent, and I assumed she wasn't sure. Then out of nowhere she screamed out, "WE'RE GOING TO DISNEY WORLD!"

We did all the things any parent would do for another, and had a really nice time.

If I had known that having a child with Down syndrome would mean play groups in the community and going out for pizza lunches among friends, maybe I wouldn't have been so sad when we first found out our child had an extra chromosome. But that's not always the side of life that first comes to mind.

I am in the process of writing a memoir that I hope will portray the pizza-party side of life that we have lived by in raising both of our children. Tuesdays and Thursdays have become my primary writing days, as Elyse attends preschool on those days. I look forward to that uninterrupted stretch of time - such a luxury! As I work through writing the scene of when Dan and I found out about Elyse's diagnosis, I am thrust back into the emotion of those early days. Fear of the unknown. Fear for the future. And I'm able to reflect back on those crucial early moments with all the perspective of where I sit today.

We knew Elyse had Down syndrome before she was born, which was good for our family in many respects. But, because we knew, we were asked to make a choice. At 22 weeks into my pregnancy, I was given the option to 'terminate'. Forfeit the life of my fetus. Even though I would never have been swayed, I am grateful for not having been pushed in that direction by the obstetrician, as is sometimes the story with other families I've encountered and read about; however, the very fact that I was offered an abortion gets me thinking.

I think about how life for a person with Down syndrome is not equal. How their lives are still perceived as less valuable in the eyes of our society. How the act of providing that choice, to 'terminate', is very telling. Any doctor who offered to perform an abortion for a couple carrying a typically developing baby, as part of their prenatal care, would be reported, but why is it still okay to suggest abortion to a mother carrying a baby with Down syndrome? What makes one fetus's life more important than the other? I felt the equal weight of my children when I carried them both to term, brought them to life and held them in my arms. I loved them equally as much from the time they were conceived, to the first stirring in my midsection, to our last kiss before bed tonight. The only differences between my daughters are superficial things -- like when their first tooth came in, or when one learned to crawl versus the other. Where they do not differ, I can assure you, is in the substance of their being, the weight of their souls. When I was at WDSC, one of the delegates, a young man with Down syndrome spoke up for his rights as a person, and said, "My soul is not disabled." That thought will stay with me always.

We are a society that strives for perfection in a non-perfect world. We are a society moving towards full inclusion and acceptance of different abilities, but, in many ways, are still moored to the past.

When I get together with my friends who have children with Down syndrome, I know we are on a slightly different path than most, but I know, as we continue to press on, bring about change, and stick together, that we are all sailing in the right direction. And that we will get there.