By Rose Busque
It’s been about a year since we got confirmation on Maevis’s Down Syndrome diagnosis. It has me reflecting a lot. Let’s start from the beginning. We opted to not have the prenatal genetics test. We figured that if anything bad was happening we would see it in the ultrasounds and DS (Down syndrome) wasn’t a deal-breaker. I grew up with an incredible cousin who has DS, and she’s one of the best people I know. So 9 months go by, all blood work and ultrasounds look great. She’s born and Noel says “she’s here and she’s perfect” (still true) while the nurses and doctors examine her. Our first night in our hospital room we ask each other, “does Maevis have Down syndrome”? Then immediately thought nope, because according to doctors there would be so many signs, health problems (all the bad stuff), and there wasn’t. The next day we met a pediatrician. She nonchalantly says the nurses see some signs of Down Syndrome and we should do some blood work for confirmation. The only sign they saw was slightly low muscle tone. The other “typical features” like her almond-shaped eyes were handed down from my handsome husband and the small gap between her toes is from me. She looked like us. The other doctors all said they are certain she doesn’t have DS so I didn’t let my mind wander while we waited a week for the results.
I remember the day we got the call so clearly. We were watching Stranger Things when my phone finally rang. The doctor confirmed that Maevis had Trisomy 21 and then continued the convo of all the appointments we had to go to, cardiologist, hearing, genetics, and more blood work because she was still battling jaundice, therapies, etc. So many scary things to hear. The fear sunk in, mourning the life I thought Maevis would have, all the usual feelings. Noel then had to get Henry from daycare and I allowed myself to get one good cry in. I wasn’t sad because Maevis was born with an extra chromosome. That would be similar to me being sad that Maevis had brown hair. I was just scared of all the challenging things I thought were coming her way. We knew Maevis for one week. Despite this news, she was a baby with baby needs. She needed her happy parents, and we were here. This wasn’t anything to be sad about. We were lucky to have a healthy baby! We went to all the appointments, with Henry in tow (such a trooper), and got her into all the therapies. After that, we found our amazing DS community. They helped relieve any fears we had because we saw so many people with DS doing amazing things.
Jobs, college, living alone, sleepovers with friends, classroom inclusion, Maevis can do it all, despite her Down syndrome diagnosis. Any fear that I could have about Maevis, I realized I could also have about Henry. No one knows what’s in store for their kids. All we can do as parents is to be there and support them, no matter what. We’re so thankful for this community, for GiGi’s Playhouse and especially for our supportive friends and family. There’s nothing but love for Maevis and I know she feels it. 💙💛
Our first time at GiGi’s Playhouse Detroit was in September 2019 when Maevis was only 2 months old. Since then, we’ve made many friends and gained so much education for ourselves and our son Henry who is 6. He was able to meet kids his age with Down Syndrome and other siblings of people with Down Syndrome. GiGi’s has given us such a big sense of community and security, knowing that Maevis will have tools to help her develop at every age of her life. We just love GiGi’s Playhouse and all that they offer.