‘I Felt More Joy than Pain’

After Down syndrome news, this mom got to the other side

My pregnancy was smooth sailing. The preliminary tests indicated our baby was perfect, so we opted not to do anything more invasive. My husband and I had nine wonderful months. Then at 39 weeks, our little baby stopped moving.

We rushed to the hospital and the doctor performed an emergency C-section. They whisked our newborn baby boy away, and before I even held him, a pediatrician was in our room telling us he suspected our newborn had Down syndrome.

At 39 weeks, our little baby stopped moving.

Hearing those words was like being hit by a bus. I was absolutely devastated. My world stopped.

I knew what Down syndrome was, I thought. But I really didn’t. Would our son walk? Would he talk? What was his life expectancy going to be? Would he live with us the rest of our lives?

Related: What ‘Disability’ Taught Me

When I wasn’t by Arlo’s side, I was feverishly researching how to help him. Hospital policy didn’t allow me to stay with him overnight while he was in the NICU the first two weeks of his life. I was lost when I wasn’t by his side. His presence eased my pain.

Eventually I’d feel more joy than pain. Eventually.

Somehow through the extreme grief, I knew we would get through those dark moments. I knew I had to feel what I was feeling, but eventually I’d feel more joy than pain. Eventually.

Slowly but surely, the heartache eased. Daily sobbing transformed into crying a few times a week. The weekly cries turned into event-induced tears caused by something stupid a relative said or hearing other parents talk about concerns that seemed so trivial compared to what we were facing.

Our little baby with Down syndrome was perfect.

Then the fog lifted. And I had an epiphany: Our little baby with Down syndrome was perfect.

Now, Arlo is 5. He’s started kindergarten. He’s walking. He’s talking. He is his own little man.

It sounds cliché because most parents say this, but I wouldn’t change a single thing about him, not even his having Down syndrome. That’s part of who he is. We say this because it’s true. It is one of the many, many things that makes our beloved child unique and wonderful.

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