In 2015, we were the parents of 4 children ages 1-6 when we decided to get pregnant one last time. Boy were we surprised to hear it was twins! One boy and one girl who were growing together and seemed healthy. We spotted a tiny mark on the boy’s heart at 24 weeks and were assured it was perfectly typical and we had nothing to worry about. A specialist confirmed the same thing and over and over we heard “healthy babies.” Until one unnecessary blood test called a DNA screen said otherwise. It was hard to hear that one of our children would have Down syndrome. All the once kind, reassuring doctors started to talk about tests and options and it was heartbreaking to repeat our wishes to continue on without testing or procedures over and over to the medical community. Nothing had changed, and yet everything had. Worry and fear flooded our hearts for this baby and his siblings and the tears fell despite our best efforts to hold them back.
Your child will never be typical, but they will be amazing.
Jay and I never prayed for Finn to not have Down syndrome, but we had to let ourselves mourn for a short time. Mourning seems like a strong word, but that’s what we did. We grieved over the typical baby that seemed lost, the one our imagination conjured up, even though God had different and better plans for us. As soon as that “make believe baby” was gone from or hearts, Finn became the baby we dreamed about and longed to meet along with his twin sister! We began learning and researching, educating all the young doctors that did scans on the twins what a wonderful life children and adults with Down syndrome can lead. We made it our goal to change as many minds in the medical community as we could about Trisomy 21.
By the time Piper and Finn joined our family we were elated to welcome them! Our nurses were wonderful, they spoke of the soft sweet feel of having a baby with Down syndrome in your arms and how they almost melt into you. They were so right! In addition to the healthy arrival of the babies, we got to reveal to our friends and family that we had delivered twins! We kept it secret the whole pregnancy.
It’s not all roses and pixie dust. Finn faced heart failure and reflux at 2 months old, we were lucky and medication helped him minimize symptoms and continue hitting milestones. By 6 months his growth had slowed and he needed surgery to repair a hole in his heart. We were all afraid but knew Finn was in capable hands at UMMC and with God watching him. At 12 months you can hardly see Finn’s scar, he’s babbling and crawling, pulling to stand, signing and sitting up by himself. His physical therapists are additional people in his life who love him. We are constantly in awe of how hard he works and how bright he is. People respond to Finn with kindness and celebration of his differences everywhere we go. We still say that we never mourned Finn or cried over his diagnosis. We simply let go of a future that was never ours in the first place, and held tightly to this better path God had in store for us.
Your child will never be typical, but they will be amazing. He or she will change how you see the world, but mainly for the better. Your baby will take the scenic route to walking or talking or reading but when they get to those things you will have so many precious memories of the journey you took there together. Without a moments hesitation I can say I would never change Finn. I might wish things came more easily for him sometimes but that is all, and what parent doesn’t want that anyway. Connecting to other parents who understand the frustrations and celebrations of Down syndrome is so important! Jay and I now laughingly share with people how we were told multiple times we had less than a 1:800 chance of having a baby with Down syndrome. We truly hit the jackpot!
With Warmest Congratulations,
Trace
