For World Down Syndrome Day, the Ds blogging community has been called to tell you all what life is like for us, The Families of a Child With Down Syndrome. This is hard because in my family, we’re in transition right now (or at least will be very soon). My maternity leave is slowly but surely coming to a close and I’ll be off to work before this month is over. My days right now are blissfully unremarkable. Sure, Tessa has a few extra doctor appointments and we do some therapy here and there, but in reality, the care of my newborn is not unlike the care of Ellie, my “typical” child, when she was first born.
We get up in the morning. She eats. I shower, she stares at the ceiling fan (it’s soooo interesting!). She eats, she pees, she does her exercises we play, she snoozes… and so the day goes on. After a few cycles of this, sometimes we go to the store. Sometimes, we put on music and dance around. Occasionally, she gets a bath. If her hair doesn’t get combed, she looks like this:
Later in the day, we get in the car to pick up Ellie. Our day gets slightly more interesting once Big Sister is in the house. Suddenly, the world is noisy. There’s Daniel Tiger on the TV, loud crashes of toys being tossed about the room, the microwave is running, Ellie is talking in a ridiculously high voice, shoving some stuffed animal in Tessa’s face, trying to engage her in play. When John comes home, there’s some rough-and-tumble play (Tessa just watches, I promise!), dinner, stories, bedtime. It’s all very uncomplicated.
Once a week, there is some therapy. The therapists come to our house and do exercises with Tessa. We do them too, when we play with her. It’s not work now, just purposeful play. When Ellie is here, she tries hard to steal the spotlight. Our PT always brings some special toys for Ellie and that helps. My house is a lot cleaner than it used to be.
Weekends are busy as they always were. We go to church, we get together with friends, we leave the kids with a babysitter and go out to a bar or to dinner.
My message, from a new parent to a newer parent, is this: In the beginning, when you hear that your child has Down syndrome, you stop breathing and think that your world has just turned upside down. And in some ways, I suppose it has. But mostly, you just have an infant to care for, one that is mostly like the other infants that you will care for, save for that pesky extra chromosome. There is some new language, you have some long-term things to think about, but you have time and resources and a community of supporters out there cheering you and your little one on each step of the way. Your child’s milestones are our milestones, we join you in your worries and doubts, your cheers of joy, your frustrations, your amazing breakthroughs. To the new parents, we support you, we’re here for you, and we’re proud of you. Welcome.
Yo soy La Lay 