I Think Its Time To Stop Grieving Down Syndrome

Down syndrome isn’t something new.

In ancient Rome there is evidence of beautiful art depicting it.

And in Canada, one in every 750 live babies born has Down syndrome.

I know these things because I am a parent of a son with Down syndrome.

But recently I read some statistics that upset me.

Between 2011 and 2015 in Europe, live births of children with Down syndrome are estimated to be down, on average, 54 per cent. Because of prenatal screenings.

And “few countries have come as close to eradicating Down syndrome births as Iceland.”

Eradicating.

I had to let that word sink in.

I was sick to my stomach and angry at the same time.

Why would anyone consider Down syndrome worth eradicating?

Information for Parents

The Canadian Down Syndrome Society shares the following facts about Down syndrome:

• Down syndrome is a naturally occurring chromosomal arrangement.
• Down syndrome occurs in one of every 781 babies born in Canada.
• Individuals born with Down syndrome may have some intellectual disability, delay in development or characteristic physical features.
• While there are some health concerns associated with Down syndrome, these health issues also occur in individuals without Down syndrome and can be successfully managed and treated.

The Canadian Down Syndrome Society also advises parents to think of their baby born with Down syndrome as a child first, and to consider their diagnosis as just one part of who they are.

A Fear of Disability

I share the above information because I know not everyone knows what Down syndrome is — not really. I certainly didn’t until I had my son. Even now, I only know everything about the condition as it relates to my son.

I think that this lack of understanding can often play into the historical narrative that what is characterized as disability is something to grieve.

Even the word "disability" can carry a negative connotation, suggesting the absence or deficit of a desirable quality or ability.

In the past, I have even heard parenting children born with a disability described as living in “a state of grief.” Because for some reason I was expected to be mourning the loss of a so-called “perfect” child.

But what does “perfect” even mean?

In my opinion, a perfect child is a kid who is exactly who they are.

And like most parents, I just want my child to have a happy life. That is why I am learning how to be a parent advocate.

Fear of the Unknown

Of course, I was surprised to receive my son’s diagnosis.

But I was also relieved to learn that he was healthy.

Down syndrome does not mean disease, but sometimes that is how people spoke to me. After learning about his diagnosis, some people acted as though he were sick.

Sure, I received your typical congratulations. I had a newborn! It's meant to be joyful. But I also received pity, because there was a perception that my son would face a bleak future or early death.

What was I supposed to do with all of that? Believe it and spend my days in mourning?

I didn’t, because no one can ever be certain of the future.

But I’ll admit that at the time I was usually too stunned to react in the moment. Most of the time I let their words hurt me. Most of the time I needed distance, and a call to my mom, to shake off their ignorance.

Honestly? All I really wanted is what most parents get: Congratulations. Support. Not a proposed roadmap to the end of my child's life.

As a mother of a child with Down syndrome, Maria has to fight for her child. Because as she writes, her son is a child like every other. And deserves respect.

Our Happy Life

I suppose it is human nature to fear what we do not know or understand.

Which is why I hope that by sharing my lived experience, I may add to society’s understanding of Down syndrome.

Reading about the reduction of Down syndrome births made me feel sad, because having a son born with Down syndrome is one of the three best things that have ever happened to me. My son makes me a better parent and a better human.

Fionn Crombie Angus, a young man born with Down syndrome, said something at a virtual conference I attended this past summer that has stuck with me: “When you consider that 499 babies out of 500 suffer from a lack of Down syndrome, my parents were incredibly lucky.”

This made me smile.

Because I am incredibly lucky.