To My Adult Son With Down Syndrome About Our Amazing Journey


Sometimes, the dreaming, the planning and the anticipation that build up a destination are all part of the excitement. Other journeys take unexpected turns, are filled with surprising delights, and have anxious moments. They lead us out of our comfort zones — seeing, touching and exploring worlds new to us. Our journey, so far, has been both.

You are now 27, and I feel as blessed as ever to be on this amazing adventure with you.

The day you were born, I held you in my arms and our path lay before us, unexpected and unclear. Of course, I didn’t know how far you would or could go. I doubted myself as the guide for this expedition, not realizing yet you would be taking that lead role.

You were born to a young, single mother in a small Midwest town. We were not alone, good friends near and family not too far. But many times, we felt alone. In those early days, I held you close. I tried to will my own strength to your tiny, beating heart that needed to be mended.

You were such a smiling baby, your eyes sparkled, your skin was porcelain. After your heart was mended, color came into your cheeks. You scooted, then crawled, then walked. In preschool, you signed, babbled and played with children your age. You hugged them. They embraced you.

When it came time for kindergarten, the roadblocks began. You were locked out of experiencing school with your peers. We were led to dead ends we did not accept. Instead, we chose another path, a school where you would be pushed to learn and accepted as an individual. We needed a place where you were both safe and celebrated.

You didn’t love school. Not everyone does. You liked music class, though. Every year, in preparation for the Christmas program, you practiced the songs, day and night, in the car and in your room. You sang and we sang along. Then, when the program day came, you stood among the other children and not a peep. Sometimes you moved your lips; sometimes not even that. We soon joked, “Too many people on stage. Just give him the mic and he’ll take the solo!”

I’m not sure if you ever showed your teachers your performing chops. I’m told you were quiet and cooperative at school. You often sat alone at lunch. You struggled with basic academic skills and your attention was short. Still, you learned.

And I worked.

Then you grew up while I wasn’t looking.

But you were looking, always watching. You watch people. You see the adventures all around you. You see conflict, humor, joys, fears and truth. You are a master at seeing the truth and boiling it down to its essence.

You began sharing your ideas and stories, complete with comedic timing, running gags and the hero’s arch. Together we built your first children’s book. Your story and plot twists, my fluffy words and formatting. We chose an illustrator. He listened and built from your vision. He brought his own talent and experience to the trip, and the adventure became colorful and alive.

The day the books arrived, you rambled to me in the car about the time your uncle picked you up from school and you went to play video games together. You spoke of the day your grandmother’s dog died. Your eyes glistened when we delivered books to the book store. I witnessed your life flashing before your eyes, everything in your life — good and bad, big and small — culminated at that moment.

You called the feeling “sad excited.” The birth of your book to the world. It does that.

Sometimes I feel like I know very little about what you expect out of life. Except you always need to know what is on the list. Also, this big quest: you fully expect to produce, “Marcus the Musical” and win a Tony Award.

There are times when people wink at me while you speak of your writing, your books, your speeches and your interviews with people around the world. They do not immediately accept the reality of all of these truths from your life, your progress from unexpected to unlimited.

Recently we spoke at the United Nations‘ building, you and I, and there wasn’t time to say all we wanted to say. We mentioned that always learning, dreaming, panicking, being creative, and being silly are part of our life, part of the human journey.

In preparing to speak at the United Nations, you wrote your introduction and conclusion. Then we added your cues throughout our message. A message of voice. You appreciated having the microphone, speaking solo. You said, “I want to help people.”

I asked, “Do people help you?”

You answered, “Yes. Everyone needs help.”

I choked up a little there, as I repeated, “Everyone needs help.”

Some men and women on our combined journey feel that helping others reach their potential, helping other humans with basic human needs, is too far out of their way. There is no room on their path, they think ability and disability are parallel roads. This idea is hard for me to reconcile. None of us really can make the whole trek alone. Disability is part of the human adventure; it doesn’t only come at crossroads, but merges into our experiences throughout our lives.

I knew shortly after your birth our path was to go unmapped in many ways. There have been anxious moments, there have been difficult and terrifying bumps along the way, and the mountain we climb is, even still, shrouded in a haze that keeps our plans to one step at a time.

Oh, but the heights you have scaled! Your book entertains and teaches. Navigating your ambitions is a challenge and a pleasure, a trek worth taking together. What’s next? Maybe a movie part, creating your next book and your musical, of course. Also, there are red carpet dates on your itinerary. For real.

Look at where you began. A tiny, innocent babe, like the hundreds of thousands born each day. Yet also different…and amazing.

I am proud of who you are.

I love your ambition is not based on expectation and your adventure is as unique as your soul. I am proud to be on this journey with you. You teach me. You guide me. You drive me. You help me. And I, I hold your hand whenever you let me. I marvel at each next step. I beg the universe to keep the path open for many more.

I love that I am your mother.

A version of this post appeared on “Our Amazing Adventure” on GrownUpsAndDowns.com

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