Losing a Child

February 3, 2024 Stephanie Rese

One of the hardest things to face as a parent is the loss of a child. Individuals with chromosome 22 disorders can experience life-threatening illnesses or birth defects.

There are members in our group who have lost children at all ages. Some as a newborn, others as adults. Sometimes it is after a lengthy illness and it is expected, and sometimes it happens suddenly and we cannot prepare. The one thing that our parents have in common is the meaning made from the life of their child, however long it may be. Even after your child is no longer with you, the support from our group continues. We are a small group and much like family, every loss is deeply felt by our community.

How can we make sense of such losses? Parenting is central to our existence. It provides us identity. Our children are supposed to carry a part of us into the future. We are supposed to protect our children, and sometimes we cannot save them. But we can honour them and remember them:

For a newborn, hold and name your baby. Have a memorial service.
Take photos. Make hand and footprints.
Keep reminders of your child—a lock of hair, some clothing.
Find a way to memorialize your child—a memento to keep with you, plant a tree, release butterflies or balloons, tell others about your child—write about them, get a tattoo. There are so many ways to keep their memory alive.

Talking to others who have gone through this experience can help. Your child was loved and valued. They mattered.

We are including resources that will help if you have lost a child.

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