Wish I May, Wish I Might

25 Jan

may 13 - evidence

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.

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8 Responses to “Wish I May, Wish I Might”

  1. Wendy Sheeran January 25, 2012 at 11:01 am #

    Vicki,

    If anyone can accomplish this wonderful goal not for your son but with him, it will be you. He does not yet realize he has the strongest of allies in his corner.

    Wendy

    • modernmessy January 25, 2012 at 2:42 pm #

      Thanks so much for saying that, Wend, it means alot. I hope I can always be strong; there is so much fighting that needs to be done for many years to come. So glad you are along for the ride! – Vic

  2. zenmamajo January 25, 2012 at 12:23 pm #

    i saw the tag ‘inclusion’ – i so get that. one of my 3yr old twins has special needs – and inclusion is a daily family mission for us…how do we adapt things so that all the kids can sample an experience – enjoyed this post.

    • modernmessy January 25, 2012 at 2:46 pm #

      Thanks for reading the post! Our son is also a 3-year-old twin, with a big sister! (No more than that, though). Your family is so cute. Congrats on the upcoming birth. It IS a daily mission to figure out something for ALL the kids to do, isn’t it? But the struggle is so worth it, because that is the best way to foster inclusion and acceptance in the community, and build strong bonds between all your children. Our three are very close, so we’re lucky. Hope you’ll check in again! — Vicki

  3. Winter January 25, 2012 at 2:54 pm #

    I wish that for your family too. Well said.

    • modernmessy January 25, 2012 at 2:57 pm #

      Winter, thrilled to have you pulling for us. — V

  4. Lisa January 30, 2012 at 7:36 pm #

    Your writing captures the very essence of the “little” dreams we all have as special needs parents; and ways which we look over little inconveniences to see the big picture of capturing a dream.

    • modernmessy January 30, 2012 at 8:32 pm #

      Lisa, sometimes the little inconveniences seem too many to count, but when a dream comes true, big or small, it’s all worth it. Thank you so much for being a reader; so glad and honored to have you. – V

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