When you have a child with Down syndrome, you have lots of dreams and goals for your little one. Some of them are simple — or I should say, they sound simple to most people — dreaming of the day he will walk, or say your name, or sleep in a bed instead of a crib, or sit at a table in school and complete a project instead of abandoning it in frustration.
Our son is 3 now, and all of the mini-dreams I mentioned have come true for him. In each case, it was a time for much rejoicing and the marking of a true turning point in his life, and in ours. I often feel like special needs parents have been given a great gift, because we appreciate the simplest things so fully. These little victories come in brilliant starbursts, unexpected and awesome to behold.
Some dreams are vaster. When you are still at the beginning of your journey like my family is, these big dreams often seem as out of reach as the next galaxy. The wish for full inclusion in a regular classroom; for a college education, a driver’s license, a job and a life of his own, hopefully with a partner by his side.
I hold these big ideas for my son close to my heart. I do. Like any parent, I want them all. But if I had to paint a picture of my fondest wish for him, it would look like this:
It is raining, and the day is gray, but warm. There is a playing field with short green grass and a mist hovering close to the ground, giving everything an ethereal quality. A group of teenage boys have finished their pick-up game and are walking off the field, water dripping from their hair and their shorts, mud clinging to their soles of their shoes. They have played football, or soccer or baseball, or maybe they’ve just completed a run.
Despite the sogginess, they are not rushing, not desperate to get out of the rain. They embrace it, because they will soon be men and men do not trouble themselves over a little rain.
They have everything going for them, and people take notice of this because it shows in their eyes. They have found a place in this world and it is called self-assurance, tenuous though it is at this tender age. Here is their secret: they walk separately but together, a temporary tribe. Some of them have matching gaits, step by step, but they don’t notice that. Maybe they are laughing, but maybe they don’t look at each other at all. They don’t need to. They are friends.
Among this group is my son. Walking as tall as everyone else, smiling but quiet. Thinking, like everyone else, about his victories and mistakes on the field, and the pizza and soda that awaits. He doesn’t notice me, because I am not there. He doesn’t need me to shepherd his every move now. But when this happens, I will know it, somehow I will know about this eternally simple day that nonetheless shook the sky in my little corner of the world.
The door to our house will open, and he’ll say “Hey Mom, I’m home.” I’ll want to look slightly annoyed because he has forgotten to wipe his feet and now there is mud on the floor. But this time, I’ll probably let it go. And that night, I’ll stay up late imagining a new dream for us.