October is for awareness...and magic (repost)

21 October 2012

Lately, for some reason I can't quite put my finger on, I have the strong urge to introduce my son like this: 'This is Kaleb. He's magical."

"Huh?" I imagine the reactions. "A magical kid?"

To which I imagine myself replying, "Yes. That's right. Like unicorn magical."

But instead I just say, "This is Kaleb." Because that's true, too.

Kaleb is my last little. Of this I am quite sure. Every milestone with him is bittersweet; I savor it knowing I won't revisit these sweet baby stages.

Kaleb also has Down syndrome. Every milestone with him is a small victory because he works so hard to get there. The best way to describe my unicorn kid is: indefatigable. He's persistent to a fault. And so far, he accomplishes all that he wants. Learning to walk has been a long process. But, at almost twenty-one months, he is now upright about 90% of the time. Today, all kinds of signing. A few distinguishable words. And endless antics as his silly personality starts to bloom before our eyes.  He savors life. Watch him dance any time a bar of music wafts his way. Even a simple beat without notes gets him moving and grooving. Watch him throw his head back and close his eyes while he relishes a bite of food that hits the spot. Watch him wave and blow kisses, his back to us, as he takes off at a steady clip, ignoring our, "Kaleb, stop! Wait for us!" Watch him worm his way into a stranger's heart with a slight tilt of his head and a shy smile. Watch his face light up when one of his sisters walks in the room. When his Daddy pulls into the driveway. When his Mommy comes home from an errand. Not to mention the way he looks people right in the eye. I've never met a baby with eyes that pierce mine the way his do. It's disarming.

October is National Down Syndrome Awareness Month. On the 7th, we had the honor of joining over 3500 people at the annual MDSC Buddy walk. We raised far more money than I could have hoped, thanks to so many of you. There were so many families there walking the same path we are. We quite literally piled onto the same narrow walkway to travel three miles by foot around a beautiful lake. We spilled off the sidewalk, onto the grass, and into the street.  The Sunday joggers got a lot more traffic than they bargained for on a cold New England afternoon. People of all ages, races, economic backgrounds, religious beliefs, and abilities--all united by someone we love who carries that extra chromosome that changes so much. And so little.

All day long rain threatened, but it held off, to the minute, for the event; the first big raindrops hit our windshield as we drove out of town. Despite whining, chilly children and watching a young boy dash recklessly into the road and nearly get hit by an oncoming pick up (he was safe, thank God), it was an amazing day.

At lunch, Mark looked around us and made one of his surprise, gut wrenching insights that always seem to undo me. "When someone tells you your child has Down syndrome or anything like that you might think you made a mistake as a parent. That you did something wrong to cause it. But when you look around here, there's no way you could ever believe that. It just isn't true."

"You're right," was all I could reply while ham and cheese mixed with yet another wave of emotion created a lump in my throat.

We live in a consumer-driven culture, for better or worse, that brands everything from blue jeans to beauty. Product marketing wants us to want the same things, think the same ways, and buy in mass quantities the next, best must-have products.  But it can't brand the varied, winged thing we call the human spirit.  There are things that make us the same no matter where we come from or what our abilities--we all love, we all hurt, we all hope. And then there are things that distinguish us from one another--our interests, talents, personalities. We're all different. And we all have unique burdens we carry. Some of us carry them more visibly than others. When I imagine those two pieces of what it means to be human woven together, I see this vibrant patchwork quilt. And it's impossible to feel uncomfortable in the presence of difference with all that beauty billowing around me.

Had you been at the Buddy Walk, you would have been swept away by the beauty difference makes. So many similar faces--Kaleb's brothers and sisters as I often think of them. So many supportive families and friends. So much united drive to make our culture a more inviting, accepting, and educated body of people who embrace others for their inherent value as uniquely created human beings.  Those of us who are Christians may talk the talk on that one, but I tell you this as someone converted to her core: never did I walk the walk until Kaleb entered my world. I'm still learning.

Is it hard sometimes? Yes. I do not wish to romanticize the power of an extra chromosome to still bring me to my knees or streak tears down my face from time to time.  But I would not trade it--the pain, the joy, the magic, any of it. I would not trade it for anything.

My magical son, courageous and faithful, gift of God.  He stole my heart, reshapes my soul.

This month, celebrate difference. Whatever causes it. Love. Big. You won't regret it. 

And I'm honored to call so many of you friends who have done that with us in your support. Your encouragement means so much to us. Thank you, thank you. We won't forget it.