What to do next if your baby has Down syndrome

“Do you know what your next project should be?” my husband’s grandfather asked me in his soft New Zealand accent from the Adirondack chair at my side.

We had just given him and the rest of the extended family a tour of our new home — and, as new homeowners do, had shared the to-dos and the not-quite-finished yets. We shared future landscaping ideas and furniture needs, decorating visions and home project plans.

“What’s that?” I replied on the sunny patio, looking into his 87-year-old blue eyes.

“Your next project should be… enjoy it. Your home is perfect just the way it is. You have everything you need. Sure, you can do projects here and there as you desire — but most importantly, you should enjoy.”

I smiled. “You’re right.” And we both leaned back in our chairs and gazed toward the towering oaks that line the backyard.

It was a simple conversation, but one I’ll always remember — not just as a homeowner, but as a wife and mother.

We all too often focus on the not-quite-perfect around us — the projects yet to be done — the accomplishments yet to be made. All the while, missing out on moments to enjoy the blessings before us.

I reflected on this sentiment today and thought it especially applied to being Kate’s mom. Granddad’s advice on our home could have been just as easily applied to me as a young mother to a child with Down syndrome — appreciative of the gift of her life, yet eager to get on with the “projects” — to get her into the best therapies, note her milestones, focus on what is yet to be accomplished.

But really, there is something more important to do than all of the other “to dos.”

To the new mom holding her sweet child with Down syndrome in her arms, frightfully asking, “What should I do next?” — my answer would be:

Enjoy.

Enjoy the weight of your newborn’s body in your arms, the warmth of her skin, the softness of her touch.

Enjoy her coos and cuddles, her newborn scent, the gift of her life.

There are plenty of things to do — as there always are — for every child. But in this moment, and in a million moments to come, always remember to enjoy.

4 Comments

  1. Delores Townsend

    This is a wonderful thought for our babies–even those who are not Downs. My daughter was my second child of 4, and I think I spread myself to thin trying to take care of all of them(under the age of 5). I wish I had spent more time enjoying them.

  2. Such simple words of wisdom! I’m constantly reminding myself to stop and enjoy my time with newborn Clare instead of focusing on the ever growing to-do list. Thanks for the reminder and congrats on the new house! So happy for yall!

  3. Erin

    Thank you. I’m sitting in a NICU family room holding my sleeping 5 week old son, whose clinical diagnosis of Noonan syndrome was just confirmed by genetic testing. Right now we don’t think he’ll be able to come home without a feeding tube, but there are bigger health issues to manage, too, and it’s all so overwhelming. Thank you for the reminder that he is also just my sweet baby boy who needs all the love we can give him.

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