Family Spotlight – Celeste’s Story

Every family with a child who has Down syndrome has a “Diagnosis Story”- the story of how and when you were told there were “concerns” and “soft markers” about your child. The day your life changes.

Our story began at our 20 week anatomy ultrasound, where our daughter, who we had already named Clementine Hazel if she was a girl, was observed to have ventriculomegaly and possible agenesis of the corpus callosum. Terrifying medical speak for two first-time parents who just wanted to know if they were having a boy or girl. An MRI and several hastily scheduled appointments with specialists followed. What concluded was a phone call in the car confirming a Down syndrome diagnosis 20 minutes after we had met with a geneticist who told us she was highly optimistic this would not be the case.

The difference between our diagnosis story and so many others is that we live in Lakewood, Ohio – the chosen site of Cleveland’s GiGi’s Playhouse. Coincidentally, they were having their Grand Opening six days after we received that phone call. We’ve been a part of the GiGi’s family ever since.

When we are at GiGi’s, Clementine isn’t “our baby with Down syndrome”, she’s just our baby. Her birth was announced in the e-newsletter and every time we visit GiGi’s she is greeted by name by people who are excited to see and hold her. One of the fears people have about their child with Down syndrome is that he/she will have a hard time making friends. As part of the GiGi’s family, we don’t have to worry about that. Clementine will grow up among a close-knit group of her peers, and we as her parents will have the unique opportunity of socializing with other parents who are experiencing the same everyday highs and lows that we are.

During our delivery, I asked my husband, “Does it look like she has Down syndrome?” He replied, “Yes, but it doesn’t matter.” And with the support and love we’ve received from GiGi’s Playhouse, it hasn’t. Clementine and her friends are so much more than an extra chromosome.