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My Growing Boy

Nobody prepares you or teaches you how to celebrate the journey into adulthood when your child has a disability and the future doesn't necessarily hold the same promises.
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My son was bringing a toy catalogue over to me when I noticed it. "Can I ask Santa for this Spiderman set?" he asked. It took me a minute to respond, as I was unnerved by what I had noticed. "Sure, buddy," I responded, "that would be a good choice." I inhaled deeply again. There it was. He was my third son and I knew the scent well. It was the pungent preteen smell of body odor. I had smelled it so many times before, but this time it took my breath away. I pulled him in close and held him tight in my arms.

When my older boys had developed the scent, it was an exciting right of passage. We picked out the coolest Axe deodorant we could fine. "Before we know it, he'll be taller than all of us!" and other such enthusiastic proclamations were exchanged. Sure, there was the slight pang of sadness every mother feels with each moment that signals her child is growing up. But there was also the knowledge of the excitement that the future holds. Watching our children grow into adults, seeing who they will become and finding out what they will do with their lives is part of the magical journey of parenthood. Witnessing their maturation and growing wisdom is the reward for letting go. But nobody prepares you or teaches you how to celebrate the journey into adulthood when your child has a disability and the future doesn't necessarily hold the same promises.

My third son, Nolan, has autism and is developmentally delayed. His interests and behaviors are less mature than his peers. He believes wholeheartedly in Santa and the Easter Bunny. He still likes to be held until he falls asleep. He continues to play with all the toys he loved five years ago. At family events, he is most thrilled to take part in whatever his little cousins are up to. He is more likely to eat a yogurt if his favorite superhero is on the box and nothing makes him happier than when a new McDonald's Happy Meal toy is announced.

But he is growing bigger every day. I can no longer find character pajamas in his size. He refuses to wear his new striped underpants and instead tries to squeeze into his old Power Ranger ones. When he is upset and having a meltdown, I struggle to calm his now hundred pound body in my arms. And I don't know how I'm going to get him to wear deodorant when I'm pretty sure they don't sell any of the Star Wars variety. He is a little boy in a body that is growing into a man.

Nolan is such a special gift to us and brings so much happiness to our family. He embodies love and kindness. He showers people with hugs, shares compliments liberally and appreciates the good in others in a way many of us forget to do. His innocent and enthusiastic enjoyment of life is contagious. And although I appreciate that he is not developing the often unpleasant behaviors and attitudes of the teenagers around him, I conversely and painfully understand it is because he is not developing typically. I've accepted that as he matures life won't look the same for him as it might for our other children. I've done my grieving of my own hopes and dreams for him and am now purely focused on what will bring him happiness in life. And what brings him happiness is his boyhood world. And so, God, would it be too much to ask, if you could just let his body stay as a little boy too?

It breaks my heart to think that he won't be able to wear the things he loves. I worry that others will laugh at him when they see a teenager playing with Ninja Turtles. That people will judge him when they see a grown boy having a meltdown. I worry that I won't be able to rock him in my arms and tell him that everything will be OK. That people will choose not to get to know the wonderful person he is because his differences will be more apparent. Truthfully, I am most afraid that as he grows up I won't be able to protect him from the world anymore.

None of us can ask for time to stop or for things to stay the same. As they say, if there is one thing we know for sure about life, it is that it goes on. Those words can bring comfort or heartache depending on your circumstances. I suppose the challenge in life is often figuring out how to go on with it. Nolan's future is the most uncertain of all my children. I know there is more fear because the course is unfamiliar. It can be tempting to worry and project into the future, but today he is happy and life is good. I worry about protecting him, but truthfully he is the one who holds the answers of how to walk this journey. He lives it every day in the way he bestows kindness upon many, finds joys more readily than sadness and concerns himself little with the judgments of others. Nolan's path may be different, but he has much to give the world and his life will be filled with its own joys and achievements. No matter what it holds or how he appears to the rest of the world, we will walk it together and he will always be my precious boy.

I realize I have been lost in my thoughts and that Nolan is still wrapped tightly in my embrace. He doesn't seem to have minded too much. "Sorry buddy," I say as I let go, "that was a pretty long hug." "That's OK," he says, "I like it when I'm in your arms." I take his growing hand in mine as we walk into the next room. "So do I, pal," I say, "So do I."

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