5 things new Down syndrome parents need to hear

The day I was told that my unborn son had Down syndrome was the day my entire world changed. In some ways, it was shattered. Everything I thought I knew about what I could expect from my life, my ideas about the kind of mother I was and could be, the hopes and dreams I had for my children…with one phone call, they were all erased. I was a mess, crying on the phone to my mom and my best friend, trying to understand why this had happened, or how, and what I was supposed to do now.

I found out about Wyatt’s extra chromosome when I was about 15 weeks pregnant. I never considered aborting my son. And knowing before he was born gave me the blessing of time: time to accept his diagnosis, to prepare myself for it, and to learn everything I needed to know.

I look back on those weeks after receiving that earth-shattering phone call and feel such a mix of different emotions. I didn’t know then that while my world may have been shattered, it was rebuilt again to be so much bigger, and stronger, and better. It’s as if, before knowing about Wyatt, my world was small and narrow and closed. Now, it’s bright and open and endless, and I wish I could go back and tell myself what it was going to be like.

With the rise of more and more advanced prenatal testing, fears about abortion rates of babies with Down syndrome rising have become louder and louder. Everyone seems to want to blame the testing, when the reality is that it is our attitudes that need to change. Whether a mother finds out prenatally or at birth, the diagnosis is overwhelmingly given as a negative, with worst-case scenarios, grim views of what to expect of her child’s life, and outdated, stereotypical medical information. Medical advances for people with Down syndrome have made their life expectancy rates soar, and the opportunities they have are almost endless.

But parents aren’t told that. They’re given the doom-and-gloom, and we wonder why so many are afraid that their lives will be ruined if they keep their baby. Many women who receive a prenatal diagnosis are given immense pressure to have an abortion. If we want to know whom or what to blame for the high abortion rate of babies with Down syndrome, all we need to do is look in the mirror (and this is especially true for many of the doctors out there).

A new parent of a baby with Down syndrome is going to be scared, confused, worried, and grieving. The last thing he or she needs is to have someone falsely reinforcing those fears and worries. So whether you’re a doctor or someone whose friend just received a diagnosis, these are the things that this new parent needs to hear.

1. You will be happy again.

I know right now this seems like the end of the world. And there will be challenges along the way (just like with any child). But the good news is, almost all families who have a member with Down syndrome report being happier and more positive than they were without him or her. People with Down syndrome themselves are overwhelmingly happy with themselves, their lives, and how they look. It doesn’t feel like it, but you will be happy again.

2. They’re still just babies.

I was so scared and confused when I found out that Wyatt had Down syndrome. I had never even met someone with Down syndrome – how the heck was I supposed to raise a baby with it? But the good news is that having a baby with Down syndrome is nearly identical to having a baby without it. Having a baby with Down syndrome means that you’ll have lots of sleepless nights, crying, poopy diapers, and maybe the occasional spit-up. You’ll also have snuggles, cute little gummy smiles, and that great feeling when they hold your hand. Down syndrome doesn’t mean you’ve somehow given birth to a three-headed space alien which needs some kind of insane level of care. He’s still just a baby. Feed him, love him, and snuggle him. That’s all you have to do. And that’s not that difficult, is it?

3. You can still do regular things.

Not long after I had given birth to Wyatt, I remember seeing somewhere a woman saying she could never have a baby with Down syndrome, because she wanted to be able to do things like go to the beach, and take her kids to Disney World. Huh? I don’t know what misconceptions of Down syndrome would lead someone to think they’ll suddenly be house-ridden, but you can still do regular things with your family. You can go to the beach, or to theme parks, or anything else you decide you want to do. We take Wyatt everywhere — to the aquarium, out to eat, to the beach. Babies with Down syndrome are just babies, and when they become kids, they’re still just kids. They’ll love seeing Mickey Mouse at Disney World as much as any other kid will, and they’ll love making a mess at the beach, too. You won’t suddenly become limited because your kid has an extra chromosome.

4. There will be virtually no limits to what they can accomplish.

When you picture an adult with Down syndrome, it’s easy to imagine someone working in a grocery store, living with his parents forever, and never having any kind of meaningful life. But people with Down syndrome today can do almost anything. There’s a man named Tim Harris in New Mexico who has Down syndrome – he graduated from college and now owns his own restaurant. A teenager with Down syndrome was recently inducted into his high school’s National Honor Society. Karen Gaffney is an adult with Down syndrome, and a swimmer who has swum the English Channel, across Lake Tahoe, the Boston Harbor, and the San Francisco Bay. She also completed the Escape from Alcatraz triathlon. Another teenager with Down syndrome has climbed Mount Everest. There are also children with Down syndrome being featured as models (for companies like Target and Care.com), and adults who are actors (the most notable example being Lauren Potter, who stars on Glee). It may seem hopeless, but there will be no limits to what your child with Down syndrome can accomplish.

5. They will be loved.

It may seem obvious, because of course you’re going to love him – he’s your baby, after all. But what may surprise you is how many other people will love him, too. And he will change so many people’s lives. Wyatt is loved by just about everyone who meets him – probably because he is the biggest people person I’ve ever met, and has a big smile for anyone who smiles at him. Your child will be changing perceptions every day, winning over people’s hearts, and finding love everywhere he goes. Of course you’ll love him, because he’s your child. But he’s going to be loved by everyone else he meets, too.