Hearing that your child has Down syndrome is life-changing. And in that moment, your life typically isn’t looking too good.
When I found out, at 16 weeks pregnant, that my son Wyatt had Down syndrome, I felt like my life was over. I cried for days, thinking about all the terrible things that we would surely have to suffer. I feared we would be doomed to a lifetime of suffering and misery, having to struggle through the terrible ordeal of raising a special needs child. The images I had in my mind were of a dumb, ugly child who wouldn’t be able to do anything for himself and would depend on us forever.
I’m embarrassed to admit that now, because it isn’t even remotely close to reality, but it’s the truth. When you get news like this, the first thing you think of is the worst-case scenario. And most moms who find out their kids have Down syndrome don’t often have accurate, up-to-date knowledge of what someone with the condition is actually like.
So now that my son’s been born, has my life been completely ruined? What is having a kid with Down syndrome actually like?
9. You Won’t Be Scared Forever
When you first find out the news, it seems like there is no light at the end of the tunnel. And all you can think about are all the bad things that can happen: heart defects, leukemia, thyroid disorders, infertility, Alzheimer’s, intellectual disabilities, and on and on. It’s so easy to get overwhelmed when you start to read about Down syndrome and see all of the health risks that come with it. Before you know it, you’ve convinced yourself that your baby is going to have a million health problems and you’re panicking and terrified.
But trust me: the fear doesn’t last forever. Eventually, you’ll see that light at the end of the tunnel. And day by day, you’ll start to realize that it’s going to be all right. Your baby is not going to have every single malady in existence, and there will be some point when you see that. Yes, there is an inevitable period where every negative emotion under the sun completely consumes you. But that doesn’t last forever.
8. He Will Exceed Your Expectations
When we were in the hospital, the neonatologist told me that Wyatt had low muscle tone. I knew from researching Down syndrome that low muscle tone was to be expected. I didn’t worry about it too much — sure, he might take a little longer to reach some physical milestones, but that’s what therapy’s for. He’ll get there on his own time.
Cue the next week, when Wyatt stunned me by rolling over within the first week of being born. At first I thought it was just an accident, but he kept rolling and rolling. Then, a few weeks later, he rolled over the other way. This wasn’t just advanced for a baby with Down syndrome, this was advanced for any baby.
My low expectations collapsed. And the funny thing is, I didn’t even realize that I had such low expectations. Just remember that even though you might have a baby with a disability, that doesn’t mean they won’t constantly find ways to surprise you and go above and beyond what you expect from them.
7. You Will Have an Amazing Support Group
One thing to keep in mind when you’re feeling scared and alone is that you’re not actually alone. There are amazing support groups out there that are ready and waiting to help you through it.
When I had Wyatt, my husband was serving in Afghanistan. I’d met the president of our local Down syndrome support group when I was pregnant and I sent her an e-mail giving her a heads-up that Wyatt had been born. In less than 24 hours, she had arranged for other moms from the support group to bring me food and gifts over the next three weeks until my husband came home. I hadn’t met a single one of these women, but they still all went out of their way to be there for me.
Having a kid with Down syndrome lets you join a whole new family of people who know what you’re going through, are ready and waiting to be there for you if you need it, and can show you just how great life with an extra chromosome can be.
6. He’ll Be Just Like Any Other Kid
Wyatt’s still a baby. Right now, at just under three months old, he loves to be held, is fascinated by his older brother, and has started figuring out how to make adorable little cooing noises. He also is very wriggly and active, and laughs when I stick my tongue out at him.
In short, he’s just like any other baby. And that will continue as he gets older. He’ll play, he’ll throw temper tantrums, he’ll play sports or learn music, and he’ll go to school.
Will he have some developmental disabilities? Probably. But that doesn’t mean that he’s going to be fundamentally different from any other kid. In fact, you may end up shocked at how similar they really are.
5. He Will Still Be Cute
I think of all the things I worried about before Wyatt arrived, this is the one that still embarrasses me the most. But it’s one of those things that is not an uncommon fear. What will he look like? Will he still look like his parents? Will he still be cute? Even after I got around to finally accepting the diagnosis, this was the one thing I continued to worry about. I was scared that he wouldn’t look like his dad or me, and that all anyone would see when they looked at him was Down syndrome.
I imagined going grocery shopping with Wyatt and having people give me the “what’s wrong with your kid?” stares. I pictured people seeing him and making ignorant comments. I had this idea that Down syndrome would be written all over his face and that everyone would be able to tell and would see him as some kind of freak. That’s not at all how it is, though.
In Wyatt’s case, he looks a lot like his brother. This means that he also looks a lot like his dad. Clearly, he’s still cute. And I’ve yet to have anyone walk up to me and ask me if he has Down syndrome. I do get plenty of exclamations from strangers about how adorable he is, though.
4. Down Syndrome Won’t Define Him
It’s really easy to define everything about your kid by the fact that he has Down syndrome when you first get that diagnosis. The way he might look, how he might act, who he’ll be. But Down syndrome is just one small part of who he is. He’s Ben’s brother before he’s the baby with Down syndrome.
For example, Wyatt seems to instinctively do things just like Ben. He’s started making the same pouty lip when he’s upset or angry that Ben does, even though Ben’s mostly stopped doing that. He’s starting to figure out how to suck his thumb and hold his right ear at the same time… just like Ben does. He watches Ben constantly and is starting to mirror him.
He might have Down syndrome, but it isn’t the entirety of his being.
3. Your Other Kids Will Love Him
When I was still pregnant, I remember being told that Wyatt was going to be a burden not only on us, but also on his brother. That infuriated me, but at the same time I couldn’t help but worry. How would Ben react towards him? Would he somehow know that Wyatt is different? Would he be jealous of the extra attention Wyatt inevitably will need?
The answers are no and no. Ben absolutely loves his brother. He laughs when Wyatt tries to talk to him. He tries to give Wyatt his pacifiers. And he rocks him in his swing. He tries to hold his hand and loves having a brother in general. Ben won’t ever know anything other than having a brother with Down syndrome, too, so it isn’t as if this will somehow negatively affect him or cause resentment.
And it isn’t just Ben who’s happy with his sibling with Down syndrome. Studies have shown that over 90% of people who have a sibling with Down syndrome say that they’re a better person because of them. Resentment? Not in these families.
2. You Will Be Happy
You might not realize it when you first get the diagnosis, but believe it or not, you will be happier because of this child. Families who have a child with Down syndrome overwhelmingly report that they have a more positive outlook on life.
The thought of having a child with a disability is so intimidating and scary. It’s hard to picture how a more challenging childhood could also equal a happier one. But it’s true. Far from being embarrassed or sad about Wyatt’s Down syndrome, I’m proud of it. I want to tell everyone who sees him, coos over how cute he is, and asks questions about him that he has Down syndrome. I almost feel like I want to brag about it because … we’ve got it pretty great right now!
It’s not even something I can put my finger on, but while it might sound cliched, it’s true. Having a baby with Down syndrome has somehow made me feel happier and more fulfilled than I felt before I had him.
1. You Can Do This
Around 90% of babies diagnosed prenatally with Down syndrome are aborted. Why is that? What makes mothers, who otherwise wouldn’t have aborted, decide that they can’t handle having a baby with Down syndrome?
It’s a common outlook. I’ve heard it firsthand — people I know have told me that I’m crazy, that I should have had an abortion, that they could never handle having a kid with Down syndrome. The truth is, you can do this.
I remember feeling a lot of doubt in the beginning. I didn’t know if I was strong enough to take all this on, understanding enough to deal with a special needs child, and so on and so forth. But as I said before, Wyatt’s a baby first. Having Down syndrome is not the entire sum of his being. And it’s the same for everyone else with Down syndrome, too. Yes, there will be challenges. But every child presents challenges and hardships. This is just a different kind.
So when you’re doubting yourself and thinking that you just can’t handle something like this, trust yourself. You can do this. And one day, you’ll be happy you did.
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