What’s it like to have a child with Down syndrome?

I read her question on a pregnancy forum late the other night.

I had been skimming a baby website to see what size fruit baby #5 compares to now (an apple) and I was caught by her subject line in all caps: DO YOU HAVE A CHILD WITH DOWN SYNDROME?

She had just received word that her prenatal tests showed markers for Down syndrome, she was scared, she was on the fence about whether or not to continue the pregnancy and wanted to know: What’s it like to have a child with Down syndrome? She didn’t preface it with the word “SERIOUSLY,” but I could tell the seriousness in her tone.

I remember that feeling. I wanted to know that, too — desperately — on the rainy Tuesday afternoon when Kate was born and we received her diagnosis. What does it mean? What does life look like? What’s it like?

But what I really wanted was for someone to tell me it would be OK. I wanted that most of all.

I did hear words of comfort in those first tender days. We received many words of encouragement and love that sustained us. But there is one person who convinced me it would be OK — and who continues to show me every day that it’s more than OK. That it’s awesome. And that’s Kate herself.

Kate is five — soon to be one of five children in a crazy house so full of noise and love, my head and heart both feel they’ll explode some days. She is a ball of sunshine and can also be a big ole’ grump, depending on the given moment or circumstance. She is delayed in some areas and yet, shows a maturity that surpasses her age in others. She sometimes has a hard time finding her words; she never is at a loss for a big bear hug. She is silly as a seal and has a smile as wide as the sea. Her big brother says “we’re the luckiest family in the world” because we have her.

People ask me if having a child with Down syndrome is hard and I respond, “Sometimes.” Being a mother of any child is hard, sometimes. Sometimes she’s my easiest. Sometimes she’s a tough cookie. And I could say the same thing about each one of my miracles — each a gift, each an opportunity for me to grow and learn.

I realized — as I tried for a moment to respond to the woman on the forum — that I was having a hard time answering her question: What’s it like to have a child with Down syndrome?

Because I found I was really just answering the question: What’s it like to have a child?

I am not naive or trying to sugar-coat a disability here — sure, “Down syndrome” makes some things more challenging if I choose to think about it that way. But being a part of this club is also an incredible, amazing joy. Life is full of challenges — Down syndrome or not. Life is full of joy — Down syndrome or not.

What’s it like to have a child with Down syndrome? It’s a great adventure in love. An adventure that looks different to every person and every family, but that’s still full of love.

I sat in church on Sunday and saw the two men with Down syndrome across from me. I have seen them both separately before, but never together, and I was happy to see that they are friends. Soon I found myself not being able to stop the tears leaking from my eyes — I blamed it on pregnancy hormones to my husband — but really, they were tears of joy. For those men, sitting in the front row, sharing friendship, praying, brought out an emotion of sheer gratitude in me.

What’s it like to have a child with Down syndrome? It’s worth every moment.

Every challenge, every fear. Every uncertainty about the future, every “extra” thing we have to do. The abundant love and grace and goodness Kate brings to this world and our family overshadows any of the other stuff — and I am so very grateful she is ours.

Today, 3/21, is World Down Syndrome Day — a day chosen for awareness and advocacy. This awareness is so needed in our world — as are the stories of great adventures in love.

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2 Comments

  1. Nancy

    You have a gift for saying so many of the things I feel in my heart! Your blog was one of the first things I found when I received my prenatal diagnosis (“Why are we so afraid of Down Syndrome?”) and you brought a great deal of comfort to me when I was very scared and unsure. Thank you and happy WDSD16 to you and your family! I now have a 17 month old full of spunk, joy, sweetness, and stubbornness…she is exactly who we were meant to have in our family. God bless.

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