To the Person About to Adopt a Child With Down Syndrome


Dear Parent-to-be,

Welcome to the first day of the best of your life.

There are so many things I want to tell you, I’m bursting. I’m so happy for you that I’m not sure where to begin.

Perhaps I should start with the words the social worker said the moment she placed my son, Charley, in my arms 25 years ago. He was 2 months old then. “Get ready for more love than you will know what to do with,” she said.

I didn’t know it then, but she was right. There are no words to describe this kind of love.

How can you verbalize the magic of those eyes that look so deep into your soul, even you never knew how deeply you existed? It will happen, and you, my friend, will open up like you never have before. Life won’t look the same as it did before.

Your life is about to change. Every parent is forced to change routines, priorities and all the things that go with them. But there’s so much more because the change you’re about to experience is a change in you. A reinventing so profound you may not even see it for years to come, and here’s the wonder of it — it’s coming from the one source who wouldn’t change you for the world.

Although there have been great strides made in awareness of Down syndrome, you may be shocked by the insensitive remarks of others. Or, as one woman said about our Charley, “He’s damaged.” There will even be uninformed comments such as, “Is he still Downs?”

I don’t know how many times I’ve sat in a doctor’s office, only to have some parent shield their child from mine, as if his Down syndrome is contagious. You may see fear on their faces and pity in their eyes. And you will shake your fist at their ignorance. Then, just as angry as you feel, you will find yourself feeling sorry for them. Pity those who don’t know the unbridled heart of Down syndrome; they could use a dose of what you live with every day. Believe me, most people are curious and wouldn’t hurt you or your child for the world.

My husband and I are acutely aware of the gift we’ve been given. Each time we’re knocked down by this thing called life, all we have to do is look at Charley’s face. We see God there. His affirmation. His endless hugs that wrap around us like a warming blanket. His smile that says, “You are still OK with me.” His words that say, “I love you much.”

So often I feel unworthy of him. I believe Charley is exactly who he’s supposed to be — a person who calls those around him to open their hearts. To accept others just as they are. I believe that when God bestows that extra chromosome, it’s His way of saying, “You only think you know what matters.”

People often say we must have incredible patience to have chosen a “child like that,” but they would be wrong. It’s our son who has taught us patience. He had to be patient with us while we learned what it meant to be his parents.

You may have to defend your decision to adopt. I don’t know how many people tried to talk us out of it, but there were several. We’ve heard it all. “Are you sure you know what you’re doing?” “It’s still not too late to change your mind.” “Why would you put yourself in that position?” “It’s a lifetime commitment, you know.”

I won’t lie to you, it’s not an easy journey. It’s not for everybody. It’s a life that demands all of you, 100 percent. You will be tested, sometimes daily. Some days you will know a lot. Other days, you will wonder if you know anything at all. And just like any other parent, there will be those moments when you will want to pull your hair out. But then, just when you need it the most, there will be that hug around your neck, and that sticky kiss on your cheek that will pull you back from the edge. Those are the moments when your child’s eyes will melt you like butter, and you’ll wonder how you ever lived without him (or her), or if you ever could.

The good news is that much has changed for parents of people with Down syndrome since we adopted Charley. There are systems in place that weren’t there before.

There is a community of families who reach out to each other and offer their experience, strength and hope. There are associations, blogs, Buddy Walks, Special Olympics and a host of families on the Internet. Don’t be afraid to reach out. These are the people who will offer you the hand of friendship and much-needed social connections.

I could go on and on, but I’ll leave it at this: When you’ve had this gift in your home, when you’ve been loved like no love you’ve ever known, when you’ve had your soul opened up, don’t forget to pay it forward. There are people who need your story. Help them to know your child. Help them see what you see.

The words I heard 25 years ago still echo in my thoughts today. They’re the words I now say to you: “Get ready for more love than you will know what to do with.”

Welcome to the first day of the best of your life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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