What Should I Tell Them?

At times I’m asked to talk to a new parent about what it’s like to raise a child like you; a child with Down Syndrome. After all these years, I’m still not quite sure what to say.

It’s frightening. Exhausting. Frustrating.

It’s exhilarating. Thrilling. Joy-filled.

You rejoice over getting last place. Over peanut butter. Over new socks. Every activity is encompassed by hugs at the start and hugs and the end, with a few extra hugs thrown in for good measure. You complain loudly about getting a Band-Aid and say “thank you” in the next breath.

You live your emotions for all to see, untempered by what may or may not be appropriate. You have conversations with your fingers and with invisible friends in the car’s back seat. After all these years, we’ve stopped trying to suppress the things that make people stare, and are trying to let you be your unadulterated, exuberant self.

Somehow, in the midst of annoying your siblings to no end, you have built in them a fierce devotion to your happiness.

You have opened doors for us, even as we opened doors for you. You have also closed a few, ones we always thought we’d walk through someday; your needs form our plans and our days.

What should I tell them, these new parents, eyes brimming in shock and fear? What should I tell them, as they face down doctors and evaluations and crushed expectations?

I’ll tell them it’s hard. Very hard, sometimes. But hard is different than bad. Lots of good things are birthed from hard. Babies, for one. Learning. Character. Miracles, even. Hard begets courage. It bestows purpose. And yes, sometimes there is bad as well.

For all the therapies and interventions designed to help you gain life skills, it is we who have been formed far more than you. We are the ones who are profoundly better for having you in our lives.

So I will tell those new parents that this challenge they face isn’t necessarily bad. It’s just hard. And many days, the goodness of this hard thing will overwhelm them with gratitude and joy.

And the bad, when it comes, will be met with the courage gained from the hard.

I will also welcome them into the fellowship of those who know the exquisite wonder of witnessing the glory of God displayed in the lives of the weak, and the achingly sweet beauty that comes of welcoming the least and the last among us.

Yes, that’s what I’ll tell them: to expect the hard and the good, and sometimes even the bad, in this adventure they’re called to. To embrace the grief and sorrow wrapped up in the miracle of it all. To expect wonder and grace and heart-stopping joy.

And also, to brace themselves for lots and lots of hugs.

10 thoughts on “What Should I Tell Them?

  1. I loved this blog. I appreciate words and thoughts that are obviously straight from the heart. You share your perspective from a place of having been there and others will know they’re not alone. ❤️

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  2. You wrote so well about life with a Down’s child. You are spot on about how hard it is. Watching my parents with my brother, I saw how hard it is and all the decisions that have to be made. When my brother was born in 1973, my parents were told to institutionalize him, that he would never walk or talk. My parents did not choose that and worked with Dwayne every day. I only wish those doctors could see Dwayne now, or when he had every single capital city for all 50 states memorized! Dwayne has been diagnosed with Alzheimer’s and is losing his memory now. He is eternally 8 years old and even though he says he doesn’t believe in Santa…if he is acting up and I remind him that Santa is watching, he straightens up real fast. 😉

    How can you prepare a new parent to go through watching their child have two open heart surgeries before a year old? I’m not sure you can really prepare them for the health problems that come up. Hard, yes, that describes it. But the unconditional love they give, the wonder of the world they have and share, these are their gifts to us, the uncontrollable happiness, they give us so much more than the world could ever see. But how to tell someone that and all that encompasses life with a Down’s child? You did a beautiful job!

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