Stories: Living with Down Syndrome

Down syndrome is a condition in which a person has an extra chromosome 21. This extra chromosome changes how a baby’s body and brain develop. To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with Down syndrome.

Caleb’s Story

Stacy’s son, Caleb, was born with Down syndrome.  She shares how having a child with disabilities gives her family a new cup by which to measure. Read her family’s story below.

There are many different emotions a mother and father go through when their child is born with a disability, but the emotion that most often gets stymied in the midst of tests and uncertainties is the simple beautiful joy of having a baby. Our son Caleb was born with Down syndrome a few months ago, and I did not wish to hide or ignore the diagnosis, but I found it difficult to celebrate as countless tests and pending results kept knocking at the door.

Each time I looked at my baby boy, all I could see was a marvelous creation. He was not like any other baby—he was uniquely himself and he was altogether mine. Having a child with disabilities gives you a new cup by which to measure; a simple smile is no longer simple, it is a triumph and a glorious sight, and a common milestone on the doctor’s chart becomes the very corner stone of great hopes. We do not know how far our children will go, but we do know the depth of our love. I cherish my little boy each day and don’t waste the present worrying about the future.

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