When I Wonder What the Future Holds for My Son With Down Syndrome


As I spin you in my arms dancing around the living room I look at your beautiful face and you look up smiling at me. It’s such a sweet moment, the kind of moment you want to bottle up and keep forever. As we dance I watch your tiny little hand rest in mine and I lean my head against yours. As we dance I think of dancing with you as you grow throughout the years. Dances with you on my feet while I lead and then dances as you get older and you lead. My train of thought continues drifting through the years of your life until the thought of dancing with you at your wedding plays in my mind. That sweet moment I had been enjoying is interrupted and is replaced with frustration and heart ache. You see my precious child, I love you so much and it pains me whenever I have a thought and then begin to wonder if you will ever get to experience it.

Then almost as quickly as the frustration and heartache appears, it disappears and is replaced with feelings of irritation at myself. I work to be an advocate for you and others with Down syndrome, and here I am placing my own limitations on you yet again. No, I don’t know what the future holds. I don’t know if you will marry, I don’t know if you will drive a car, or a million other things that many may take for granted. But baby boy I am making it my mission that no matter what, I won’t limit you. I will work to take out my own doubts, fears and expectations. Instead, I will give you all my love and support and then let you lead from there. Always showing that I will be there to dance with you no matter the victory, big or small.

The other night I was reminded of a memory from college. One night my roommate and I were laying in bed in our dorm room talking as we waited for sleep to find us. We were talking about boys when my roommate sighed, “If only we could look in the future and see who and when we’d marry. It would make it all easier now.” I agreed. We wouldn’t spend time worrying if we’d ever meet the right someone and when the time would be right. We could go through life more relaxed knowing that it would all work out in the end.

I believe I was reminded of the memory as I can easily fall into the trap of getting lost in the worry of tomorrow. This thinking robs the joy from the present. I’ll admit I have to be careful not to focus too much on the future. I begin to worry and become frustrated wanting to get an inside look at what that holds for you. This is when you, my sweet boy, seem to fade and I seem to let your diagnosis take center stage. I believe I am reminded of this memory now because my roommate and I were looking for the reassurance it was all going to end up OK. Then we were sure we could relax and patiently wait it out and stop worrying and just enjoy the journey.

Going back to my vision of dancing with you at your wedding, I think of the mother-and-son dances I’ve seen. I watch the emotion in that moment. The dance is special and can be sweeter because it is a culmination of moments that have led to that place in time. The moments that include sleepless nights, kissed boo boos, cuddles and birthdays celebrated.

If I spend time wanting to skip to the ending, like my old questions of who I would marry or now my worry of how your life will play out, I lose out on the journey itself. By skipping around in life and knowing the outcome, we take away the journey. By taking away the journey, we cannot fully appreciate the ending.

mother smiling with her baby boy wearing an oxygen tube
Amanda and her son.

Whatever life throws our way, baby boy, let’s dance. No, I do not know the future. However, I do know that I will make every effort to not look so far into your future that I miss the joy of the day. A day that once gone we will never have back. To miss out on that would be a sadness. To miss out on all your smiles, our talks, and to watch you discover the world around you. To watch how you make everyone fall in love with you. I can’t promise life will go as planned, but then again life rarely does. I can promise that as long as I’m on this earth you will have a dancing partner. We will stumble along finding our rhythm. I will hold your hand in my mine, stare at your beautiful face, and I will let you lead the way.

“And now I’m glad I didn’t know

The way it all would end

The way it all would go.

Our lives are better left to chance

I could have missed the pain

But I’d have had to miss the dance.”

— Garth Brooks, “The Dance”

Follow this journey on Adventures, Reflections, and Life Lessons.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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 Submit a Story page for more about our submission guidelines.

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