What to Expect when You’re Expecting Down Syndrome

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We spent this past Christmas with my wife’s family in Germany. It was a wonderful time of connecting with them, seeing them love on our kids and sharing in their lives. It was also the time that we learned that our new child, in my wife’s womb, was 99.9% likely to have Down Syndrome.

When we came home to California we did a follow-up Level 3 ultrasound. It confirmed that diagnosis and also confirmed that our little girl has a heart defect. They call it an A/V canal defect. Basically her heart can’t separate the oxygenated blood from the un-oxygentated blood effectively. This will give her breathing problems, make her more prone to severe colds or infections. Fortunately, this specific defect has a surgery that has an extremely high success rate that will dramatically improve her quality of life. This means that our little girl with Down Syndrome — if all goes well in the first few months — will have an open heart surgery around her 4th or 5th month of life.

It’s been quite a lot for us — as a family of five — to process.

Through the invaluable support of friends and family near and far we’ve come through a point of acceptance and finally are at a place of anticipation. This weekend I just finalized the co-sleeper, my wife washed the new car seat cover. We put together a detailed schedule of who is providing care and/or transportation for each of our kids while we’re busy at the hospital giving birth. We’re in the heat of all the baby prep. It’s reminiscent of that same time we had with each of our other children. But there’s one significant difference: Our expectations.

Comparing my expectations now to those of our previous children, I’m most reminded of my feelings and expectations surrounding our first-born. There was a lot of anticipation. But there was far more uncertainty than anything else. No matter what any parent tells a couple having their first child, there’s just no way to adequately prepare for what life is like on the other side of having a child. Going from child-less couple, to parents is a big life-changing shift no matter how you slice it. Life changes in hundreds of ways that you expected, but had no idea what it would look or feel like. Then life changes in thousands of ways that you didn’t know were possible. Finally, several years later you wouldn’t recognize your pre-parent self if he walked in the room and shook your hand.

Right now is kind of like that.

Right now, I know that a new little life is coming to join our already busy family. But right now, I have no idea how the other three children will adjust to that. I have no idea how my wife and I will adjust to that. I have no idea how my work-life will necessarily change or adapt. Generally, I have no idea how many things there are on the other side of this birth that I have no idea about.

My response to the unexpected typically is to shut down my fears, to ignore anxiety. I tell myself that I simply don’t have enough data to make any rational decisions or judgments with. Why should I get overly excited, or overly anxious about something that I simply can’t prepare for? “I’ll deal with all that when it gets here,” I tell myself. Somehow that consoles me — or allows me to function despite the bubbling storm of anxiety deep inside.

There is one thing, though, that actually, technically, really does console me. I’ve been continually reminded through various friends, family, even acquaintances that parents of children with Down Syndrome are blessed. Every story I’m told, every article I read, every YouTube video I watch confirms this over and over again. As a Christian, I call this the work of the Holy Spirit, breathing life and assurance and strength and wisdom deep into my soul.

I am not naive though. I like my expectations to be heavily tempered with skepticism and a broad swath of experiential suffering. I tell myself that I’m sure the parents who divorced after having a child with Downs don’t blog about it because the mere testimonies by a divorce attorney will tell you the truth. I counter my hopes with echoes of the fears my wife and I entertained with tears over that Christmas vacation in Germany. I’m not wrong to know that this “blessing” isn’t all roses and rainbows.

But I would be wrong to let that skepticism and those fears dictate my behavior, or overwhelm my expectations and hopes.

As we prepare for the unexpected right now, I think it’s important for me to make my expectations clear, knowing that they’ll all most likely get blown out of the water with the reality of who this beautiful girl will actually be. Maybe this is just an exercise to help me recognize myself several years from now, and see how far along I’ve come. Either way, this is what I’m expecting when this new girl is welcomed into our home.

What I Expect of Her

• I expect that she’ll be totally unique, like no other — just like my other three children.
• I expect she’ll have amazing abilities to awe and inspire me. Perhaps with her wit, or charm, or humor, or her love of music, or art, or animals. She’ll inspire awe — just like my other three children.
• I expect that she’ll struggle with making friends sometimes, or fitting in. Perhaps she won’t understand others’ meanness, or selfishness. Maybe she’ll herself be prone to those things. We’ll have to find out. She’ll need to learn social graces and learn to make and leave friends — just like my other three children.
• I expect that everyone who knows her will love her but nowhere near as deeply as I will — just like my other three children.
• I expect that she’ll learn at her own pace, and that we’ll help her patiently — just like we did with our other three children.

What I Expect of My Friends and Family

• I expect that they’ll look to my wife and I for queues on how to handle her, or interact with her — just like they did with my other three children.
• I expect that friends and family will adore her and never pity her. That they’ll continue to enjoy our family, never pity us.
• I expect that those that embrace her I’ll recognize as having been my dearest most true friends all along.
• I expect that those who don’t know how to interact with her will start to casually, subtly avoid us. I pray peace over them as they go.

What I Expect of Myself

• I really don’t know…
• Except that I expect to love her to the moon and back a million-thousand times — just like I do my other three children.