When Your Baby Has Down Syndrome: A Letter To Grieving Moms

by Jillian Benfield
A baby with Down Syndrome holding its feet and smiling
Jillian Benfield / Shutterstock

Dear Mom,

I, too, listened to those five soul-crushing words: “Your baby has Down syndrome.” I sat on the same hard doctor’s office bed, surrounded by white walls and fluorescent lights that all seemed to spin around me.

I also walked those tear-stained steps back to the car, amazed I had enough strength to turn on the ignition.

Like you, I sat behind the steering wheel. I watched happy kids whiz by on scooters, their laughter bringing more tears as I wondered if my child would ever have friends.

As you are doing now, I lay in bed. The emotional exhaustion made falling asleep easy. But waking up—waking up and realizing I hadn’t dreamt it all—was a nightmare.

I stood at the bathroom sink. I questioned whether my eyes would ever not be swollen. I stared at the bottle of prenatal vitamins you’re staring now, and I speculated if there was any point in taking them.

I watched my toddler the way you are watching your toddler today. Her joy suddenly brought me profound sadness. I feared what having a sibling with special needs would do to her. I also slipped up by crying in front of that sweet baby, starting a chorus of tears.

I prayed your prayers, asking God what I did to deserve this pain, asking Him why my child has to suffer.

But I have also been to places you cannot see yet.

I lay in a hospital bed. I gazed at my baby with almond-shaped eyes as he stared into my soul, feeling waves of peace wash over me for the first time in months.

I rocked in his empty nursery, waiting for him to come home from the NICU, feeling hollow without him.

I heard him laugh for the first time, a sound so joyful it forever zapped any lingering feelings of grief.

I held my husband’s hand as a surgeon cut open our son’s heart, wondering how I could possibly go on if anything were to happen to him.

I am watching him fight to achieve every milestone, renewing my own strength that seemed to be lost for a time.

I have fallen so deeply in love with this child that I can’t imagine him any other way.

It’s OK to grieve. But know that your grief will not overshadow what has yet to come.

Yes, there will be challenges. But like anything in life, every step you take prepares you for the next.

Your child is not ill because of Down syndrome. All is not lost because of Down syndrome.

In fact, Down syndrome can help you heal. Down syndrome can help you find yourself. Down syndrome can add layers of meaning to your life you never imagined.

So, grieve. Grieve if you need to, but don’t stay there too long. Don’t let your grief steal the joy that’s coming.

Nothing is being taken away from you. You are instead getting more than you could have ever imagined.

Dear Mom, know this: Your life is not over. A new life has just begun.