We took a walk, took a moment

I’m glad it’s not perfect all the time. If it were, it would be harder to enjoy those little moments and little hours of perfection that sometimes slip by without us even noticing.

For couple of hours the other day, nothing else mattered. Nothing else even existed, really. Just my family, some leaves and a little bit of love.

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The defining moment was after taking dozens and dozens of photos, I handed the camera over to Scott and said, “Sometimes you have to be, not just see.”
And to my surprise, he didn’t just put the camera down or hide it for a few days, he actually took some pictures; some good ones too.

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And when he wasn’t looking, I looked at him like I probably haven’t looked at him in years. I looked at him like the lovers look at each other in the movies, from across the room, with everything else a blur. I don’t know if Scott has ever looked so handsome to me. The way he was twisting the leaf in his hands and watching his family run about in the leafy park. He looked so content and so peaceful and it made me so truly happy.

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My happy day actually began much earlier, when I decided to get something out of the closet and just embrace the past for all that it is and was and not keep it hidden behind closed doors like it didn’t actually happen or like it has to be preserved in plastic until the end of time.
So Zack wore one of the outfits that Uncle Paul had given him years ago when Zack was just a little blob on an ultrasound. And so then we had to put Addie in one of the outfits, too, take some pictures, send them to Aunt Alice and just feel glad that we were remembering that day, even if there was drool and some breakfast On Zack’s Brazil shirt.

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The four of us decided to take a walk-the day was perfect – the temperature, the sunshine, all the leaves and that little Autumn breeze.
Two strollers side-by-side, the adults talking about their days and dreams, pointing out cows and colors to the little ones who were taking it in with their wide blue eyes.

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And then, near the end of our walk, I saw it — piles and piles and piles of golden leaves just begging for jumping toddlers. And a Momma.
We threw leaves up into the air, we rolled around in them, and sometimes we just laid down and looked up at the sky together. There was spinning around and of course lots of jumping.
And when Scott wasn’t looking, I took Addie out of her stroller and laid her gently into the leaves and just watched her take it all in for the first time… The feel of a crunchy leaf in her tiny fingers and the breeze on her bare feet. Zack handed her a leaf and applauded when she came down to the space on the ground next to him. He gave tickles and even a kiss. Her smiles in return gave it all away. They really have a beautiful love for one another. And I hope we do this often enough that falling leaves and empty parks on neighborhood walks always remind them of that love.

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We took so long on that walk that dinner was a little later than usual that night and then, because Momma had to look at all of her photos to see what moments had been captured, bedtime was a little late, too. After all, there was backlighting and bokeh and all sorts of beautiful smiles.

I went to sleep smiling that night, and I think everyone in my family did, too.

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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.

Rekindling in Richmond

We had ourselves a long overdue getaway — just Zee Momma and Zee Daddy for two days with nothing to worry about other than not getting lost and not getting mugged.

It’s easy to get caught up in everything — therapy sessions, work schedules, feedings and household chores. It’s easy to get caught up in all of the million little things taking up every second of your marriage before you realize you have forgotten about your foundation — about the love you have for one another and the thousands and millions of little things you love about that person.

We hit that point. Where we took each other for granted and we didn’t appreciate those little things anymore.

So in honor of our third wedding anniversary, we decided to find a hotel in my resort’s company in a city neither of us have spent time in within driving distance for a mini-vacation. We were set up with a room in Richmond, complete with champagne and strawberries upon arrival and set out for 38 hours of things we never get to do — sleeping in, eating out alone, dressing up for dinner and going places you can’t typically bring two babies to, at least not if you’re even partially sane.

So we took turns choosing activities (you should have heard Scott’s groan when I chose botanical gardens!) and we didn’t plan too far ahead. And we had to follow certain rules — like holding the other person’s hand really firmly every chance we had.

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Somewhere between singing twangy country duets in the car, getting stuck in traffic halfway up the entryway to I-95 and crashing onto a king-sized bed with a huge sigh, it started to show up — that love we used to wrap around ourselves like a blanket. Then somewhere between the botanical gardens sigh and the admission under a rose-covered gazebo that maybe this wasn’t so bad, it really began to come out in full force. In that gazebo in front of a Victorian house, we had one of the best conversations we’ve had in months.

And from Scott’s choice of mini-golf (“C’mon, we can never do this!”) and my giving in with a shake of my head because only my husband would choose mini-golf for his wishlist; somewhere between there and a huge, delicious meal in a dimly-lit private room, there I found my laughter. The insane belly laughs Scott could bring out in me a thousand times a day that recently had been stifled by frustration and annoyance.

I laughed so much those two days and neither one of us have stopped laughing since we returned. The old spark, the old flame even, well you better believe it’s back.

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Scott and I have been through so much in just a handful of years — we’ve relocated, we’ve each switched jobs, we’ve had two babies, learned about special needs and found many more gray hairs.

It’s not to say that we resent our kiddos or the time it takes to raise them just the way it takes to become successful, responsible adults. We talked about them a lot over our vacation — imagining Zack running around a pond and spotting a turtle we were feeding; Addie’s blue eyes widening in the hustle and bustle of the downtown noise.

The kids were never far from our minds.
In fact, one of the most amazing moments of our trip came when we were exploring the lobby of our hotel while waiting for our car to be retrieved. We walked by this display of children’s faces at least three times before we were both caught off guard by a handsome little toddler with big eyes and big cheeks like Zack’s — eyes that were clearly kissed by Down Syndrome. There was a quote about the boy being called a flirt by his parents and we both laughed about our own little two-year-old flirt at home.

And then we realize that it was an entire series of photos of children who each had Down Syndrome, put up just that week by the local DS Chapter. Each child had quotes talking about what they loved to do, what their parents thought they were capable of, what their future held in store for them.

I didn’t think Scott could peel himself away from those photos. And for perhaps the first time in our relationship, he asked me to take a picture with my camera. It was beautiful.

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We used to take weekend drives or day trips all the time; it was where I really fell in love with photography and my husband’s Human Atlas-like skills. It was nice to get back to that feeling of a great adventure, an adventure whose ending you don’t quite know at the start of the trip, the left turn out of the end of the driveway.

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Sometimes you just have to shrug your shoulders, pack your bags, tell your wife they can’t bring the babies, not even just one baby, and have faith in the tank of gas, the GPS and the hotel reservation and leave the rest up to fate. Sometimes you have to just start out on an adventure to remind you of all of the adventures, good and bad, you’ve had in your journey so far. Sometimes you just have to do it. As long as you hold the other person’s hand.

Don’t let go.

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