What to Expect when You’re Expecting Down Syndrome

We are a family of 5, three children. We are expecting our fourth to arrive any day now. She has Down Syndrome. We're expecting great things.

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. 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.

13 thoughts on “What to Expect when You’re Expecting Down Syndrome

  1. Beautifully written Matt! I’m so excited for you and your family…I did a lot of work on high school with classmates who had downs, they were all amazing kids. One in particular I got to be pretty close to, he had the best sense of humor and cracked me up every time we talked. Each of us is unique in our own way, and we should all embrace that! You and your wife are (from an outsider looking in, ha) amazing parents…with the love, encouragement and direction you provide, your daughter will thrive…just like your other three kids 😉

    I’m sorry to hear about the surgery that’s needed, as a parent I know the feelings that you must be having…but God is in control of all things, and that’s the most comfort we will ever need.

    Thank you for sharing this with us! Caiden and I have been praying for your family and your little girl each night before bed since you told me you were expecting…please continue to keep us posted on the big arrival and all of the other fun things that come along with new babies 🙂

      1. Right now there are 7 special needs we are praying for, dad is one too 😉 and then we cover all the “thank you for” and our many blessings! Did you pick a name yet? It would be great if we could pray for her by name…when you do, or once she’s born, let me know!

  2. Thank you for sharing your thoughts, feelings, and expectations with us, Matt. We love and adore your precious girl already! She will bring joy, laughter, and more love than thought possible into your home and into our hearts. Blessings will abound because she herself is already a blessing! We eagerly anticipate the wonderful day when we will meet her, hold her, play with her, hug her, and shower her with kisses. Though we are some distance away, we will support and pray for you, Melanie, and all four of your children every day. I think you’re right that it won’t be all roses and rainbows. Facing unknown variables and unforeseen challenges is certainly scary, and surgery on a tiny heart is terrifying. But nothing is unknown or unforeseen to God, and nothing is too difficult for Him. He is good and faithful. Always. So we stand with you, heart-to-heart, and anticipate the imminent arrival of a miracle, a sweet, little baby girl, fearfully and wonderfully made. Sending big hugs and SO MUCH LOVE your way. Love you, friend.

  3. I love this. You’re a good human being and your daughter is off to such a good start having such an awesome dad. She’s going to blow your guys’ minds—and hearts—in every way. I’m excited for you and your family!

  4. Matt your perspective brings light and understanding . We had much the same thoughts bringing Izzy home, and still do. Life looks different with four kids, we love them all differently and they love us all differently. God has amazing plans for each life and we can not wait to meet your little girl and love on your whole family! We love you guys and are praying for you all! Wish we could be there to welcome her!

  5. I am happy to hear that we have another baby girl joining our family and she is lucky to have you for a father, just like your other three. I look forward to meeting her. She is a lucky and special little girl. Let us know if you need anything.

    Love,
    Aunt Shawn

  6. Hey Matt, so happy to hear the announcement of having another baby girl added to the family.
    Being in this large family of ours you have to have a quirky personality to fit in … I know she will also. Just like the rest of us.
    Love & Prayers for a safe delivery and Joy overwhelming .. Aunt Glennda❤️

  7. Congratulations for your new sweet baby girl! I can’t wait to meet her! I’m beaming with joy to know that this special soul will be delivered to a wonderful family to provide her with everything she needs. Wishing you happiness and strength as you become a family of 6! Keeping you all in my thoughts and prayers. With love, Richele

  8. Matt, this is so well said, and I’m so happy to see your positive and practical outlook. The part about people fading away is true, and it’s a difficult thing to go through…but the people you meet (doctors, therapists, other parents etc) will blow you away with their support and friendship.

    You’ve got the right outlook. Just be dad and everything else falls in line (just like with your other three children)

  9. I got tearful reading the section of what you expect from her. That is really beautiful.

  10. Thank you, Matt for sharing. I am so proud of you for facing this challenge head- on. I know that God is proud of you too and knew he could trust you with this challenge. Your whole family is blessed by this little one joining your already blessed family. I can’t wait to love on her and your other little blessings as well. Love you all so much, mom

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