ASK MOM: Son born with Down syndrome and mom’s not coping
Apr 07, 2023 01:18AM ● By Mary Follin & Erika Guerrero
THE PROBLEM: I knew before my son was born he had Down syndrome, and I thought I was ready for it. Now that he’s 3 months old, I realize I wasn’t prepared at all. He doesn’t do anything that other babies do at this age, and it makes me feel sick inside. (I know, I know. Don’t compare. But I can’t help it!) The hospital put me in touch with a group of other moms who have children with Down syndrome, and they all seem to be coping well, like they’re grateful their kids are the way they are. I keep trying to put on a good face, but (and this is hard to admit) I can’t seem to love him the way these other moms love their children. The very worst part is looking into my son’s eyes. I see so much love in them, and he deserves to see that kind of love in my eyes, too. Please don’t judge me for this. I’m trying to change, but I need help.
MARY SAYS: So you thought you were headed for a ski trip, and you’ve ended up in a sunny beachside town instead. You’ve got your winter jacket, gloves, and ski pants—but no bathing suit. Maybe you’re disoriented, not quite sure what to do, and right now, all you want to do is ski.
I’m not trivializing your experience, Mom. You’re in a situation where almost everything is not what you thought it would be when you first got the wonderful news that Baby is on his way. You didn’t mention whether or not you have other children, but if you’re a first-time mom, many of the feelings you’re attributing to your son’s condition reflect how most parents feel when their baby arrives.
But let’s pretend he's not your first. You’re experiencing emotions with this one that are hard for you to admit: disappointment, fear, and wishing he weren’t the way he is. Top that off with the guilt you feel for having these emotions, and you’ve got a recipe for a heavy heart.
Offer yourself some grace. You can’t help but feel what you feel, and by resisting these emotions, you’re actually turning them into the enemy. How about giving yourself permission to feel exactly the way you do? By acknowledging your feelings and accepting them for what they are, you'll be surprised how quickly they become less ‘sticky.’
When a friend of mine had a child with Down syndrome, a wise counselor told her that it’s important to grieve the child you ‘didn’t have.’ Sounds harsh, doesn’t it? But when my friend did this, she was able to let go of the ski trip and become curious about the seaside town. This child has since grown into a rockstar within the family and is the brightest light in her mother’s heart.
Don't stop looking into your baby’s eyes. This precious little human could only have come through you, and you are exactly the right mother to love him.
ERIKA SAYS: Sweet girl, we have been individually created and handpicked for our children. Sometimes I go down the path of comparison and feel like my son deserves better, but that’s untrue. I have everything he needs—whether I believe it or not—and I feel that way about you, too. Every child is different, and every parent’s love for their children is different. I could never love my son as my neighbor loves hers, because her child has a unique personality, qualities, and quirks that make him who he is.
Motherhood is one of the hardest things we’ll ever have to navigate. Society makes us feel like we have to fit into a one-size-fits-all mold, which is simply not the case. Those moms in your support group? It's highly likely they, too, felt the way you do, at least for a while.
So now most of them are thriving, but remember, they once were the mom with a three-month-old baby with Down syndrome. They have all grieved like you and have had to come to terms with being a mom with a special needs child. Everyone in your group is on a different page in their story. Don’t compare their progress to where you stand today; rather, be inspired by it and let it bring you hope.
And try not to get too caught up in what your son is and isn’t doing. Celebrate him through every milestone, try to see him for who he is, and appreciate his growth at every stage.
Continue attending your support group and other mom groups where you feel surrounded by love, compassion, and understanding. Consider seeking therapy to work through your grief. And finally, give yourself grace every day. Remember, you and your son are just beginning to get to know one another. You and your beautiful little boy are in this together.
ASK MOM offers parents two perspectives on today’s child-rearing issues—one from a mom with grown children (Mary), the other from a mom raising a small child (Erika). If you’re looking for creative solutions, or your mom isn’t around to ask, drop in!If you have a question for Mary and Erika, we’d love to hear from you! [email protected]
Read more ASK MOM advice.
Mary Follin is author of the award-winning children’s book ETHYR and Teach Your Child to Read™, an online phonics program for children ages 3-6. She is mom to two grown kids. Follow Mary on Instagram at @advice_mom.
Erika Guerrero is a freelance hair and makeup artist, Erika K. Beauty, single-mama to one amazing boy, and author of She’s Not Shaken, a blog offering hope and encouragement to women in all walks of life.
Suzanne Johnson, mom of five children and grandma of eight, is an illustrator, book cover designer, and author of Realms of Edenocht.