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November, 2019

The Wonder

2019-11-12

By Sue Robins

My youngest son is now 16 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ”Down syndrome.”

Years have passed, the intense grief has faded. I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I was mourning the loss of the so-called perfect baby. Looking back, there were many factors that helped me move forward to see the light again.

My personality is good for people – for love – like my family. – Aaron

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. His two older siblings were 6 and 9 when he was first born. His sister Ella, who is now 23 and a pediatric nurse, says that Aaron taught her at an early age to be more patient and inclusive, accepting and non-judgemental.

Aaron’s older brother Isaac shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And Mike, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy.

For example, Aaron loves swimming competitively, watching hockey and eating hamburgers just like his dad. The majority of children’s genes come from their mom and dad – it is only the one chromosome that is extra. Our kids are more like us than they are like Down syndrome.

Ella once said to me, ”I wish other people could see Aaron as I see him.” This is why it is so important for all people who work with children with disabilities – health care professionals, therapists, educators – to take the time to understand the actual reality of families. Often people have stereotypes of disabilities stuck in their head, just as I had when Aaron was first born. We all must confront our own ableism if we are to create inclusive environments where everybody belongs.

Aaron has taught me that different is not bad; it is just different. Much of my own suffering in life comes from pining for a different life. I had to move through acceptance to celebration of Aaron in my own time. Yes, some things are harder, but the important things require hard work. I’ve also discovered that I can do hard things.

Families need to know that they and their child can – and will – live a good and rich life. Professionals can help by sharing authentic stories of other families, reminding them to take care of themselves and connecting families up with other families.

But the most crucial thing that people can do when working with families of disabled children is to be aware of their own personal values about disability. It is their responsibility to do their research and check those values against the actual lived experience of families and children.

For it is love, patience and faith that will help guide a families’ way. Health professionals - in particular - are in a unique position to help families begin their child’s life as a celebration and not a tragedy.

This is a chapter from Canadian author Sue Robins’ new book called Bird’s Eye View: Stories of a life lived in health care. Sue was unexpectedly immersed in health care as a mom when her third child was born with Down syndrome in 2003. In 2017, Sue became a patient when she was diagnosed with breast cancer.

This book was written with health professionals in mind to encourage more humanity in health care by sharing stories about how it feels to be the mom of a child with Down syndrome and a cancer patient.

Bird’s Eye View is available on Amazon.ca. Sue’s website is: www.suerobins.com.

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