Go21 - Elyse's story

Elyse's Story

When I was 28 years old, and half way through pregnancy with my second child, our baby was given a prenatal diagnoses of Down syndrome.  At the time we found out, I experienced intense grief marked by sadness and worry.  The following day, my husband and I flew on a scheduled trip to the island of Barbados for a friend’s wedding with red eyes and tear-stained cheeks.  During that precious week away, with time alone and relaxation, we came to appreciate that we were grieving the life of the typical child we were expecting, but that we also looked forward to welcoming the child who was very much alive inside of me.  At the end of the week, with the bright sun overhead, I stood along the beach as the water lapped the shore, caressing my toes, and let my grief sail away on the waves of the sea.  I vowed to become an advocate for my daughter. 

Nothing worth having comes easy.  We soon found out that shortly after birth, our daughter, Elyse, would need surgery to repair a blockage in her duodenum.  The scar across her abdomen will forever serve as a reminder of how lucky we are to have her in our lives (and how thankful we are to the doctors and nurses of McMaster Children’s Hospital).

But that was just the beginning.  After Elyse was born, we connected with our local Down syndrome association in Hamilton, and our eyes were opened to a whole new community and a wealth of information.  We then moved to the Halton region, and were warmly welcomed into the well-established Down syndrome community there, which has become an integral part of our family’s life, and provided us with immense and immeasurable support, as well as long-lasting friendships.

Elyse is a healthy three and a half year-old now, and will be attending a French first-language school come September.  She loves to run, play with her peers, and sing along to her favourite songs on the radio.  Her preschool teacher recently commented that it’s not what makes Elyse different that draws the other kids to her, but that “the other children like to play with Elyse because she’s kind, and has a gentle way about her.”

Through my daughter’s diagnosis, I was given a second set of eyes through which to view the world.  I have come back to writing and volunteering, which have always been important to me, but never a priority.  I was given the courage and opportunity to travel the world, and flew to India for the World Down Syndrome Congress in August 2015.

What began as a seed of grief has grown and transformed, blossoming fully into the most beautiful experiences of my life.  Thank you, Elyse.  We love you.