5 Things I Wish People Knew About Raising a Child With Down Syndrome

It was January of 2012 when I discovered that my son Wyatt had Down syndrome. Prenatal screenings had revealed a higher risk – one in six, to be exact – and I had decided to go ahead with the amniocentesis. My husband was in the Marine Corps at the time, and two days before I had the procedure, he deployed to Afghanistan. Three days later, alone in our house in North Carolina, I got the phone call telling me the results: male, positive for Trisomy 21, or Down syndrome.

At the time, I was devastated. Down syndrome was terrifying. The idea of a sad kid suffering through life, friendless and riddled with health problems, flew through my head. I had no idea how very wrong I was. But I adjusted, and when Wyatt was born, with my husband looking on via Skype, I was nothing but happy. If I had known better, I would have known not to be scared… because having a child with Down syndrome is not scary. These are five things I wish people knew about raising a child with Down syndrome.

1. They’re a child before they’re anything else.

Wyatt has Down syndrome, but it does not define him any more than I am defined by being short, or by having curly hair. He’s now a normal, happy toddler. Yes, he has developmental delays. But he also loves Frozen and playing with his brother and sisters. He throws temper tantrums and hates getting his hair cut. He really loves music, and will sing along if you sing to him. In short, Wyatt is Wyatt. His disability does not make up who he is.

2. I’m not sorry.

Often, when I tell people that Wyatt has Down syndrome, the very first thing out of their mouth is “I’m sorry.” I don’t always have time to respond the way I want to, so let me say this here: don’t be sorry! I’m not. I wouldn’t change a thing about Wyatt. Down syndrome, in case you aren’t familiar, is a condition where there is a third copy of the 21^st chromosome, present in every single cell in the body. So changing the fact that he has Down syndrome would mean fundamentally changing who my son is – and I love my son. I’m not in mourning or sad because he has Down syndrome. In fact, in many ways, it’s made me better.

3. You’re going to join a whole new family.

One of the best (yes, one of!) things about having a child with Down syndrome is that you become inducted into a new and wonderful family. I have friends around the world who also have kids with Down syndrome, and we are each other’s lifeline. We’re there for each other through thick and thin, we celebrate each other’s successes and cry over each other’s tragedies, and the bond we share is irreplaceable. And anyone who has a child with Down syndrome gets to be a new member of the family.

4. Your children will be just fine.

After Wyatt was born, some people told me that I shouldn’t have any more kids, because Wyatt would be a “burden.” Leaving aside how blatantly offensive that idea is, let me assure you: any siblings there might be will love their brother or sister with Down syndrome. Studies have found that siblings of people with Down syndrome report nothing but positive things. My kids are still young, but oh, how they love their brother. My older son, in particular, has such a great bond with Wyatt and seeing their relationship as brothers is one of the highlights of my life.

5. You will become a better person.

Having Wyatt has made me kinder, more understanding, and more open to people with disabilities. Before Wyatt, I thought I was accepting and tolerant. I really wasn’t; I just didn’t realize that I wasn’t. But now, I have more of an open mind. I’m stronger than I was before. And I can unequivocally say that having Wyatt is one of the best things to ever happen to me.