there’s a fire starting in my heart, reaching a fever pitch and it’s bringing me out the dark
Truth be told, I was going to write in honor of World Down Syndrome Awareness Day a couple of weeks ago. About how one diagnosis has changed my family’s world. About the darkness Scott and I found ourselves in one afternoon in the hospital nearly eight months ago.
Then, funny story.
I was planning the post in my mind when Zachary’s diaper exploded right after a meal when I was home alone with him. The shock of such a poopy sight all over his highchair made for one of those deer-in-headlight moments on my face, I’m sure. Within moments of sharing the yucky story on facebook (with none of the photos I took, be still, although this one is from the immediate and clean aftermath…), I had several of my Mommy friends sharing stories of poopy highchair experiences of their own, and the ones in the carseat and the crib.
You see, my baby poops just like any other baby. Even with the Big Bad Down Syndrome label.
throw your soul through every open door (Whoa) count your blessings to find what you look for (Whoa-uh) turn my sorrow into treasured gold
You see, he has messy diapers like any other (nearly) eight-month-old. He eats the same baby food. He rubs his eyes like most babies do when he’s sleepy. Just like other kids, he smiles a lot. And he cries his fair share through cranky moments, too.
And as his parents, we’ve shared a lot of experiences that other parents have, DS label and all. We fought our way, numbly and in a daze, through sleep deprivation. We learned the hard way not to leave a baby boy’s penis exposed without covering. I have playdates with friends and their babies and it’s not awkward or uncomfortable or even sad anymore. We scoop up each other’s babies, and I can’t speak for them, but I feel the same glorious love and motherly awesomeness when I see and hold their babies as I do with my own.
We probably think a lot more than other parents because of DS. We think about exercises and goals and physical therapy. Those are things most of our friends don’t consider.
I know I regret. Regret wasting my time making plans I had no business planning. And dreaming daydreams of things that aren’t that important.
And we worry. We worry about missing goals and lazy days of exercise. We sometimes, when our guard is down, worry about the future. That big, unpredictable scary series of tomorrows. Tomorrows of shorter life spans and unknown skills and achievements and delays. Tomorrows of teasing and confusion and the need to spend an entire lifetime “proving everybody wrong.” How sweet it would have been to have felt no need, no pressure… no DS.
But really, the majority of our lives are not spent thinking about our lives with Down Syndrome, but rather thinking of a life that has beautiful blue eyes, blonde wispy locks of hair and reaching, grabbing, exploring fingertips. A life that has taught us to live.
A co-worker used the “r” word in front of me last week. And it was the first time since Zack was born and I started following the Spread the Word to End the Word campaign that I haven’t felt the need to throw a fit and stand on my soapbox with a megahorn.
We have hibernated our long, cruel winter.
I guess the winter makes you laugh a little slower, makes you talk a little lower about the things you could not show her
And it’s been a long December and there’s reason to believe
Maybe this year will be better than the last
I can’t remember all the times I tried to tell myself
To hold on to these moments as they pass
And Spring is arriving, in teasing, agonizing glimpses here and there, but it is arriving nonetheless. Better late than never.
Between the budding flowers and green fields along my walks with Z-Man and the new job and everything that it brings with it, I am truly opening my eyes to everything around me.
And if we try to leave, may God send angels to guard the door
No, love is not a fight but it’s something worth fighting for
Little darling, it seems like years since it’s been here