My little baby Christopher that we lost many years ago had Down Syndrome.
And so I don’t talk about Down Syndrome much on the blog. I just find it difficult. I remember a few years ago I was leading a youth group event out of town, and we stopped to get a snack at a McDonald’s. I went up to the counter to order my McFlurry and this really well spoken Down Syndrome young man, likely about 21, took my order. Before I could even open my mouth I ran back on the bus, bawling. A bunch of the teens saw and I’m sure they must have thought I was nuts (thankfully my daughters saw and they ran interference, knowing the problem).
But seeing him, doing what I hoped Christopher would have been able to do (be so polite and friendly; have a job; be healthy), was just a lot to take in.
So I still have that rather raw spot in my heart that has never completely scabbed over.
Recently author Heather Avis told me about her book The Lucky Few, where she talks about adopting two children with Down Syndrome, along with another one who needed love. And I adored her story, and invited her to share some thoughts here.
Welcome, Heather:
It was a classic Southern California springtime morning. I had spent the morning at a playgroup with my two-year-old son. It was a group we meet with every Friday and it happens to be my favorite playgroup of all time. You see, my son has Down syndrome, and every Friday we have the honor and joy of getting together with other parents who have babies his age who also happen to have Down syndrome.
On this particular day, as one of my dear friends and I were headed out to our cars, a woman approached our crew of mamas and kids, “Is this where I can drop off my donation for the Women’s shelter?” she glanced at the faces of our children with a bewildered look on her face.
“No.” the woman who coordinates and oversees the playgroup stepped up. “That building is about a block down the street.”
“Oh, okay, thank you.” The woman lingered and before she turned to go she asked, “so what is this group about?” “This is a playgroup for babies and toddlers who have Down syndrome.” My friend graciously smiled at her.
The woman awkwardly looked at the faces of the children in our arms, “I don’t understand, I thought people took care of that.” Then she raised her eyebrows and walked in the direction of the Women’s shelter.
My friends and I just stood there in shock. Our beautiful, capable, worthy children on our hips. The small humans who we love with every ounce of our being and would sacrifice our lives for. Our children, with almond shaped eyes and button noses. I repeat, our kids!
There were so many truths we all wanted to share with this woman who we were certain had no idea how awful and painful her remark was. How unbelievably offensive it was for her to look at the children in our arms and essentially ask us why we would even consider giving them life.
But as the mother of three children, two of whom have Down syndrome, this woman’s perspective is all too common. I adopted all three of my children. Yes, I adopted two children with Down syndrome, and the fact is, if they did not have Down syndrome then their birth parents would have made the choice to parent and not create an adoption plan. The fact is, the majority of women who get an in utero diagnosis choose to terminate their pregnancy. The fact is, most people living outside of the Down syndrome community still view Down syndrome as negative.
Here’s the thing: these decisions and opinions are rarely, if ever, based on truths. As the mother of two children with Down syndrome, here is what I wish I could have communicated with that woman that day about what it means to have a baby with Down syndrome:
1. A baby with Down syndrome is just that, a baby.
Sometimes our babies with Down syndrome experience serious medical needs during their first years of life just like sometimes babies without Down syndrome experience serious medical needs during their first years of life. But mostly what our babies with Down syndrome need is to be held and loved. To have their diaper changed when it’s dirty and to be fed when they are hungry. Babies with Down syndrome are babies.
2. Recognize that this baby is a blessing.
If you are not the parent of a child with Down syndrome or if you do not have a loved one with Down syndrome, then the only thing we need from you when you find out we have/are having a child with Down syndrome is a big congratulatory smile and hug. I have met so many expectant parents who have told me I was the first person to congratulate them on the baby they were expecting who had recently been diagnosis with Down syndrome. The sad eyes and misplaced condolences of well-meaning people are deeply hurtful. Just say, “congratulations”!
3. Take on the posture of a learner.
If you do not have any kind of close relationship with a person who has Down syndrome, then this is your opportunity to learn. Come along side us and learn what it means to have a loved one with Down syndrome by watching and listening and extending grace and love. If you really want to know what it’s like to have a loved one with Down syndrome, listen and learn, smile and nod.
4. God created Down syndrome.
For people who love Jesus, it’s important we know this truth. When I snuggling with my son or daughter with Down syndrome, singing songs or recalling the events of the day, I am holding in my arms a creation of The Creator himself, image bearers of God himself. In the Bible, in the book of Psalms chapter 139 we hear of a God who fearfully and wonderful creates us in our mother’s wombs. I believe these verses are for my children with Down syndrome as much as they are for anyone else. I believe God added an extra chromosome to every single cell in my children’s bodies with purpose and joy. Babies with Down syndrome are not a mistake.
There is so much I want the world to know about Down syndrome and what it means to be the mother of a child with that extra chromosome. I wish the woman from that day, the one who looked my son in the eye and wondered why we didn’t just “take care of it”, could spend just a few days with my children. I know it would only take that long for her to begin to change her opinions. Because the real honest truth? People with Down syndrome are incredible, and those of us who get the honor of parenting a child with Down syndrome are the lucky few.
Heather is the founder of the hit Instagram account @macymakesmyday, which currently has more than 78k followers and inspires people from all walks of life through posts of her three adopted children, Macyn, Truly and August. Her first book, The Lucky Few just released from Zondervan. Heather’s family resides in Southern California.
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Hope you all have a great weekend, everyone!
Sheila Wray Gregoire has been married for 25 years and happily married for 20! She loves traveling around North America with her hubby in their RV, giving her signature "Girl Talk" about sex and marriage. And she's written 8 books. About sex and marriage. See a theme here? Plus she knits. Even in line at the grocery store.
Great article! I was an assistant in a special needs classroom before leaving to stay home with my son and boy do those kiddos nestle into your heart! To interact with a child with down syndrome is just so special because they share love so freely.
I do not have a child with down syndrome but for a few days after my daughter was born I thought that I did. She just looked like she had down syndrome. I even have pictures of her at six months old where you would have thought she did. So for those first few days in the hospital I just kept waiting for someone to come and tell me but no one ever did. I wasn’t the only one who thought she did as my husband and mother thought so as well but none of us said anything. The reality is that it didn’t matter to us. We felt nothing but love for her and hope for the future. She was born three months after my mother in law passed away and was such a gift during such a difficult season. Even though that didn’t end up being our journey my heart is so tender towards those with down syndrome and the loving families that surround them because of those days when we did think it was our journey as well. The misguided words of people who don’t see the beauty and perfection in all of God’s creations make me sad but a sadness for the person whose sight is so blurry. What a sad way to live.
Beautiful. Thank you.
Beautiful written! I understand, Sheila. I miscarried a little girl who would have been born with Down Syndrome. My husband and I miss her every. single. day. My kids were so excited to have another baby. It was hard on them, too. However I know that I have a special intercessor up in heaven praying for us until we meet again.
I’ve never met a parent of child with DS that, after the initial shock, didn’t feel incredibly blessed and honored to be entrusted to care for him/her. Kids with DS bring so much joy and happiness to their families.
I do emergency foster care, so the kids don’t stay with me long term. They come to me at night when the agency has no other safe place for them and stay with me a week or so until a good home is found.
I had a little boy who was just a week shy of 2. He did not have downs, but he did have some developmental issues. But I thought he was just the most perfect, precious child and that anything that precious was a miracle of God.
I thought about him when you mentioned “button noses” in the article. Because my little baby has the cutest button nose and big brown eyes. I had to hold him all of the time and I would kiss him on his little button nose and he would giggle. I remember walking around with him in my arms all day and he would just have this contented little smile on his face and carry around his food (he always had to have food in his little hands)
I loved that child so dearly and cried for months after he was taken to his new home. So, I at least have a bit of a taste of how precious each child is. That little boy was the most precious child ever and he certainly was a miracle and gift from God to anyone who is blessed to have him in their family.
File this one under “no one knows why but God knows what He’s doing”: People with Down’s are the only people group naturally immune to malaria. No one knows why. God knows what He’s doing!
I didn’t know that about Down Syndrome! Isn’t that interesting?
I have a 26 year old daughter with Down Syndrome who is aphasic (difficulty with reading and speech). She is unable to work outside of the home but we still are amazed at how much of a blessing she is. I truly believe that God protects our family in so many ways, not because of anything my wife or I do, but simply for the sake of my special needs daughter. I believe God has a unique place in his heart for these kids. And who wouldn’t want to be part of this unique blessing? As I ask that question, I fully realize that the answer is, unfortunately and horribly, more than 90% of the people who conceive Down Syndrome children don’t want them. May God have mercy on them even though they showed no mercy on their unborn children.
I was a nanny to 7 children before becoming a sahm to our daughter and soon to be son. And I can so easily say that my absolute sweetest child was the baby I watched and lived with for a year and a half. She has Down syndrome and was just the happiest baby. Rarely cried, had the sparkliest blue eyes. She was so sweet and easy too. Putting her to sleep was so easy, all I had to do was hum her “her song” and rock her and she would be out. Didn’t matter if we were home or out in the distracting world. I still miss taking care of her. I ran into her a few days ago and she is 9 years old and as adorable as ever. Like all kids with downs she makes the world a better place!