Awareness, October style

There’s something magical about this month, and I don’t just mean pumpkin spice lattes, changing colors on the mountain foliage or an Autumn breeze streaming past scarecrows and Jack-O-Lanterns.

You see, every time I log in to Facebook or open my e-mail I am rewarded with downward-slanting blue eyes, the debunking of myths and the feeling of a virtual hug from strangers who share the most incredible bond with my own heart, simply because of an extra chromosome we’ve all come to cherish.

October, as you may have guessed, is Down Syndrome Awareness Month. An entire 31 days to reflect on, learn from and educate about Trisomy-21, Mosaicism, Translocation and all sorts of other words that affect somewhere around 1 in 600 long-awaited and forever-cherished little babies.

In October of 2010, Zack was two months old. We had survived a difficult August, a slightly easier September and we’re meeting strangers like Miss Kathleen, our tears-up-when-he-does-well physical therapist who has become a part of our family. We met Miss Sheri, too, and tried to keep her spirits up when, after only a few moments, Zack would start crying during every single session at our house. We began Early Intervention and I cried for the first five or six sessions. Oct. 2010 taught me strength, the hard way. I kept praying that one of those sessions, everyone would smile and laugh and say, “Oh, just kidding… he’s just like every other kid.” In Oct. 2010, Scott was in a funk, Grandma was in denial and my loved ones who seemed to get it were much too far away. Friends tried to use the words “normal” and “at his own pace” and “he’s doing so great.” And I knew they were just trying to make me feel better, just trying to dodge the great gigantic elephant in the room with three copies of the 21st chromosome.

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A year later, in 2011, we were almost there. Kathleen and Sheri were the glue that kept us together on the toughest days with their motivation and cheering and patting us on the back for what they called our obvious hard work. They also kept us grounded in reality and didn’t let us get too cocky or too comfortable. Grandma was great with exercises, Daddy was out of his funk. Mommy was pregnant. It wasn’t until early January of 2012 that we would have a Phase Two ultrasound to have some strange, rushing specialist pick apart our daughter’s neck width and fingertips for the slightest sign that we would come crashing into the ground from the cloud we had been resting on for months now. And there was a part of us that was scared for “normal,” too. We didn’t know how to be parents to “normal”; how to handle impressive muscle tone and clothes’ sizes that matched ages. We didn’t know how to prepare ourselves for either outcome and we realized we had to come to grips with it once and for all. And so, in the last year, we have spread the word. We have spread the word, literally, to end the word. We have put our story in a live TV news interview. We have shared our story in a local parenting magazine. We have done blog entries, shared photos, answered questions, offered unrequested answers and then realized that our life is very much normal.

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In Oct. 2012, Zack has four therapists, thanks to Speech Therapist Miss Janet and Occupational Therapist Miss Charity. He waves hello and bye-bye to Miss Sheri and cries every time she goes to leave. Miss Kathleen has offered her fair share of tears over climbing steps and standing and first steps and now a running, jumping, head-bumping toddler. Scott is quicker than I am to don the Proud Parent hat sometimes when it comes to his little boy. His Facebook cover photo is our Little Man playing and laughing with a friend his age — something we thought we had lost in 2010. In 2012, I have more dear friends than I ever earned and deserved — friends who know how huge it is that Zack is eating with a fork — stabbing the food on his plate, bringing the utensil slow and steady to his mouth and then a celebratory clap while he chomps away. He signs “more” when he wants something again; he calls “Maaaa” when I walk in the door from work. When I tell him to get a book so we can read, he’s on my lap, book in hand, before I can realize the beauty of this moment, the amazing world I’ve been given.

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I still have difficult days, impossible moments.

Zack’s second annual review with Early Intervention was last week and it was bittersweet. It’s our last annual review. Come August, Zack will no longer qualify for EI and will move on to transition to an IU8 pre-K program or a pre-school/day care program of our choosing. The very program that made me want to scream once or twice a week is a crutch I can’t imagine living without; I can’t imagine these “family members” not offering advice on how to get Zack excited about one-on-one play or pointing or eating properly or taking care of himself. At his review, Zack was at that beautiful “normal” level for three areas, including gross motor skills, something he struggled with so much in those first few trying months. And he also measured very, very low in a few areas, such as speech/communication, which put him at only the equivalent of what’s expected from a 14-month old. He’s 25 months old. So, you can tell me every kid develops at their own pace or you and I can both agree that my child excels in some areas and then has serious challenges in others, but that we are all doing every.single.thing. we can to make sure he achieves his highest potential.

He causes trouble in such an ornery way, just like any other two-year-old. He gets his butt smacked every now and then, too. He gets the sniffles some days, too, and just wants to cuddle with his Momma, a blanket, a stuffed animal and some books. He splashes like a wild man in the bathtub, drenching whichever adult is in a 20-mile vicinity and giggling at the bubbles on his chest. He has taught me patience many times — like when he dragged the toilet paper through three rooms while I was changing his sister’s diaper or when he threw all of my underwear and bras down the stairs one day, through the baby gate, after I had just put them all away.

And Zack has taught me fierce love, deep understanding and the desire to give him everything I wanted him to have before I knew anything about Down Syndrome. We’ve amended our dreams but we haven’t given up on any.

I still hope that my son and I dance a slow song in front of all of our loved ones at his wedding to the most incredible partner he could ever ask for; but if he doesn’t or can’t get married, we will dance together in the living room every morning, just like we do now.

I still hope that he will live on his own and make his own money at a job that he loves and always wanted; but if he winds up with a bedroom in our basement and is working for his Daddy, then I suppose that’s just fine, too.

I would love for my son to be happy, healthy and independent and nothing more. And that… that I know I can give him. That I can give to Addie, too. It has nothing to do with DS. It’s just being a Momma.

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And so I spend a lot of my time signing. A lot of my time smiling and capturing moments with my camera. And yes, I still spend some moments crying in the bathroom alone or simply breathing in the blueberry shampoo from the top of his rough blonde hair and reminding myself to be appreciative for all I have and all he has.

Down Syndrome is not a period. It’s a question mark, and a lot of our answers won’t come for months or years or even a decade or two.

With the help of the National Down Syndrome Society, International Down Syndrome Coalition, friends like Kelle Hampton, the local Down Syndrome support group from The Arc of Blair County, Facebook friends, webinars, forums and the many, many good, true loved ones who have done all they could to make Zack’s world better and make their understanding and assistance easier, all that I have learned in these past two years has been possible.

And for all that I have shared with you in the past hundreds of words, the past two years of writing and with every phone conversation, e-mail, Facebook post and conversation in my living room or yours, I hope you will take a moment to spread the word about what you have learned from my smiley son and the everyday moments in which he kisses the top of his sister’s head and walks just a little bit faster and stronger and more confidently.

I hope you will visit our fundraising page and help us continue on our quest to raise $5,000 for the National Down Syndrome Society’s research and advocacy projects. If you’ve already donated or can’t donate at this time, we understand, but please don’t let it stop there. Post a message on social media; send an e-mail to your loved ones about a little boy named Zack and a Momma who said Down Syndrome isn’t as bad as she thought it would be.

I couldn’t have done it without that NDSS and all of these amazing friends and resources along the way.

And I know tomorrow will be easier than today; that 2013 will be more incredible than 2012.

That an extra chromosome is the most amazing gift my family could ever be given.

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Please help us celebrate Down Syndrome by donating here.

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