Turning off the silly switch

Special needs is all up in my face this week.

A co-worker asked me about the chances of Scott and I having another baby with special needs if we were to get pregnant again and I very matter-of-factly told her that the chances were higher but that it didn’t matter.

“This is the only type of parenthood we know,” I answered with a shrug. Because really it doesn’t matter anymore. We’re over the shock and confusion, the hurt and the anger. All we know is this beautiful way of life we’ve been given and we’ve accepted.

*   *   *

But hard as we try not to focus on Down Syndrome or worries about the impact some so-called “special” needs has on us, other times it just smacks us over and over again.

 

Zack and I were invited to a Mommy-and-Baby playdate with some friends this afternoon, but had to turn down our invitation. You see, The Dude has a therapy this afternoon and so I need to manipulate his schedule just a bit so that he gets in a good nap before Miss Sheri visits to work with him on all of his skills. As much as I’d love to see Zack and all of his little friends splashing in a baby pool on my day off, our entire Zee Family Team needs to make sacrifices now to provide better possibilities in the future for the little big guy.

 

 

And there will be more playdates. With friends who don’t segregate, don’t judge, don’t worry, don’t fear.

 

 

 

*   *    *

 

 

 

 

 

My most recent purchase wasn’t a new outfit for work or a cute pair of shoes. It wasn’t an item for our house to-do projects or a gift for a friend. It was a Baby Sign Language book and flashcards. Scott and I spent a good 20 minutes performing a funny skit for our a Mom Friend the other day, and while we were all cracking up, in the back of my mind, it was yet another reminder that putting my hand to my mouth to signal “eat” at mealtime or stroking pretend whiskers on my cheek when a cat walks by is yet another small way I can help my son.

*   *   *

 

 

In my most pitiful moments, I watch people’s faces at work as I show them photos of Zack. Have I told them about DS? Can they see it for themselves? Do they feel bad for me?

Do they feel bad for Zack? Oh please no, no, no.

*   *    *

 

 

Sometimes “special needs” just surrounds us. We can’t escape and we aren’t looking for it.

Yesterday was Scott’s first Father’s Day and my heart felt so heavy all day, even hours later while I sat at my desk at work by myself working on a schedule. This isn’t fair for Scott, I tell myself.

 

And then I get mad, furious at myself. That last thought wasn’t fair for Zack.

 

*   *   *

 

 

 

 

 

 

Scott was watching ESPN (it was Father’s Day after all, and all’s fair in love and marriage) when a short segment came on on some golfer who has a son with severe Autism. I was feeding Zack breakfast, we were giggling. Scott was talking about some championship Ernie Els won and his style of play.

And then, silence.

The video could have been our story.

“But the pictures can’t tell the story”

‘I just hope he’s happy.’

For five minutes, I tried to steady my hand to spoon cereal into Zack’s mouth, as months’ worth of tears flowed down my cheeks.

The Els accepted the diagnosis that would change their family forever.

‘He enhances our lives and he keeps our feet on the ground.’

The portrait is different now.  A portrait that may not be easy, but is pure and precious.

I wiped my tears and received the most glorious smile from my little man, as if right on cue. I kissed my husband, nodded in agreement with a statement he didn’t have to make and we moved on, surviving yet another one of the many, many tests and reminders along the way.

*   *    *

My mother-in-law left her Good Housekeeping magazine here last week after one of her days babysitting. I picked it up while Mickey Mouse sang his Hot Dog song and talked about turning off the silly switch, expecting to browse for a new recipe or stall from cleaning the house.

I found this article instead. A story about a family with two severely disabled adult sons. And the life they never thought they’d be living.

Nobody talks about what happens when the adorable kids grow up, as Matt and Sean did, to be clumsy, awkward adults.

“We were meant to have Matt and Sean,” she says, and I believe she means it.

 

Who asks the most terrifying question a parent can ask, the one all of the praying and baking and scrubbing and bleaching can’t help her outrun: What will happen to my boys?

If watching my sister-in-law deal so absolutely extraordinarily with her ordeal has taught me anything, it is the power of now, the beauty of seeing things as they are, not as you wish them to be. She adamantly refuses to live a life of “if only,” wrapping her arms around what is.
I was about to turn the pages back, re-reading the story as if I hadn’t already memorized it by heart, when a noise captured my attention and my heart. My son, whose future is unknown, whose struggles may only just be beginning, was laughing, sharing a silly smile with me from his twisted blanket on the floor.
I put the magazine down, leapt down to the floor and smothered him with kisses and tickles, stopping once to sign the word for “Mommy” and basking in the beautiful blue eyes.
<—-  (PS — Check out who’s up on their knees, rocking back and forth like a big, strong boy?!)
Those eyes that were one of the first signs of DS for doctors the day he was born. Those eyes that are my grasping back to the beautiful, wonderful world we live in, with blue skies and clouds of white.
A world that has a silly switch that can be turned on every now and then — that NEEDS to be turned on every now and then. But the beauty of a switch is that it can be turned off.
Sometimes, I need to be in that room. The switch turned on, the tears turned on, the sadness and all of it. But I don’t allow myself to stay too long. I close the door, turn off the switch and get back to what’s much, much more important.
The secret to surviving is turning off the silly switch.
And laughing. Lots of laughing.

 

My favorite Scott-as-Dad moments

In no particular order:

 

 

– Scott’s absolute calmness when our three days of contractions turned into an emergency unplanned C-section at 8cm dialated. He was soothing, patient and brought an absolute sense of peace to me in an otherwise anxious time. That calmness turned to pure excitement soon after, and at just the right moment. I caught the first glimpse of that excitement when he let go of my hand, stood up from his chair in the operating room and leaned over the curtain to steal that long-awaited first glimpse of his son.

 

I’ll never forget the smile on his face in that moment.

 

– It’s a tough one, but I have to include this. There is this image I just can’t forget — as the hospital pediatrician finally sits us down to tell us he suspects Zack might have Down Syndrome, I look over at my husband, at Zack’s father, and see in those brown-green eyes the same thoughts I’m thinking, the same worries I’m worrying. Later that night, after faking our way through visitors, we finally whisper in the darkness, listening to our new baby’s sleeping breaths.

“I hurt for you,” Scott told me. “And I hurt for Zack.”

 

– Baby monitor eavesdropping. I don’t do it as often as I used to, but there are few sounds as beautiful as listening to my dear, dear Scott telling Zack good night.

“Alright, big guy. You get some sleep now…” It just makes my heart jump out of my chest with happiness.

 

– Since I started the new job, on weekends when I go in on a later shift, Scott jumps out of bed at the first baby sound and lets me steal another hour or so of sleep while he takes the baby downstairs. It’s a special treat and one of the many, many sacrifices Scott makes for my happiness and wellbeing. (And there might be more eavesdropping…)

 

 

 

– One of the things I was most worried about with Zack’s diagnosis was Scott feeling as though he lost his “dreams” — the all-star-baseball-pitcher-plans we made while Z-man was the size of a poppy seed.

And then when Zack was maybe a week old, Scott had him practicing his throwing arm with a cat toy on the living room couch.

And just a couple of weeks ago, Scott had to take photographic evidence of the distance Zack threw one of his toys. He was so proud.

 

 

– I’m looking at a Post-It note I kept from Scott from the day we got our positive pregnancy test.

Originally with a bouquet of flowers, it reads, “These are for you, Mommy.” Best.Surprise.Ever.

 

There are a million more reasons why Scott is an amazing father. He’s oh-so-patient, he’s fun, he has a perfect sense of humor. But he’s also thought-provoking, practical and stern, in all the right increments. He has handled this fatherhood that’s slightly out-of-the-norm in a way that’s only made me want to be a better mother.

 

 

 

Best of all, we have each other’s backs and we’re on the same team.

 

 

 

 

 

I’m happy there’s an entire day to celebrate the great dads like Scott — dads like my Dad, who is my ultimate hero, and who sacrificed so much without ever hesitating to bring me the opportunities I have had up until now and making me the person I am today. I’m happy there’s a day, but I hope I can make more of an effort to make EVERY day special.

 

So a big shout-out to all of the dads out there — our new dad friends like Scott K., Bret, Mark, Keith and Jared; our “old” new-dad friends like Bill, Brad and Mike; and an “I love you” to all of the dad-like figures out there for me — my father-in-law Calvin, my uncles Joe and Paul, my grandpa here and my PopPop in Heaven and all of the other fathers, pops, papas, dads and pas out there.

 

He didn’t tell me how to live; he lived, and let me watch him do it.

 

Love notes and state lines

Friday Night was Date Night — our first one in four months, actually. Worse yet, it was our second one since The Dude was born. I take full responsibility for that.

I still get nervous and excited for our dates, which I think is a good thing, considering Scott and I have been together for almost five years now.

 

 

 

I couldn’t help but notice the love in our house — visible in obvious and non-obvious ways… the love notes I keep, little chores done, Mommy Time given and many more actions from my best friend.

 

 

 

 

I spend days thinking about everything from how lovely the glass of wine with dinner will taste to whether I should go for the new pink shoes or the white Audrey Hepburn-esque ballet flats (I went Audrey).

 

I painted my toenails and spent more than five minutes on my hair, all with the help of some very helpful assistants, including Senor Cutey Pants with his big blue-eyed “Momma-you-look-great” gaze.

 

(Or was it “Enough, already!”???)

 

 

 

Weeks to prepare and I still had to run back inside for things twice because I forgot my cell phone and camera.

 

But away we went, earlier than expected because it was a short day of work for Scott and a day off for me, waving a quiet goodbye to the still-napping Z-Man and thanking Scott’s mom 10 times on our way out the door for watching the little guy.

 

 

 

 

Our original plan was to go to a highly-recommended Italian restaurant about 30 minutes away in Cumberland, Md. One of the great things about where we live is that in two hours or less we can pretty much make it close to the Ohio border and into Maryland, West Virginia and Virginia. In four hours we can hit my home area of the Garden State as well as New York state. I think there’s something so freeing about crossing a state line to go to dinner or along your Sunday drive. Anyway.

We passed our Welcome to Maryland sign and were just a mile or so away from the Cumberland exit we normally take when Scott said he had an idea. This sort of statement usually makes me chuckle, because at this point in our relationship, it’s meant everything from a last-minute weekend getaway to a home improvement project to a new videogame. Safer and less expensive than a new guest room, Scott suggested that we keep heading south for a bit into Morgantown, WVa., the home of Scott’s favorite college team, WVU. Within 30 seconds, I could tell that Scott had this in his mind for at least the duration of our trip so far and so I left the decision up to him, smiling as the wind from the window whipped my hair, waiting to see if the blinker would turn on or if we would continue.

And continue we did.

 

 

I think if Scott could live anywhere else, it might be West Virginia. I’ve exhausted all of the cousins-sisters-wives jokes on him already, and he’s still a major supporter of the state and possibly works for their tourism bureau on nights he says he’s out bowling. I think it’s simply the lush, dense forests and the similarities between the area he grew up in, minus some farms and homes and adding some larger rivers and winding ridges. And pick-ups. Adding a lot of pick-up trucks.

 

 

Not long after our spontaneous turn-off southward, it became quiet — the good quiet. We were playing the Alphabet Game (no, seriously, we are fiercely competitive with this and play every time we drive further than to the grocery store!) when suddenly I realized Scott was not just simply sucking at the game, he was just not playing anymore. He was taking in the scenery, holding tightly to myhand near the center of our two seats and smiling to himself. It was perfect. And so I gave him the peaceful time — and the loss.

 

 

We pulled into Morgantown, and well, no offense to its citizens, but it didn’t really do it for me. It needs a lot of love, and even Scott agreed that it wasn’t all that he remembered it being from trips there for baseball camp in high school. I think it was something about rose-colored glasses and the beloved football and basketball teams.

 

 

 

 

 

 

 

 

We still had a delicious dinner at a very cute Italian restaurant, filled with the only bit of serious talk we needed to get out of the way, before taking a little walk along the Monongahela River.

 

 

 

 

 

 

 

 

Then we decided to head up to Cumberland, a familiar and beloved spot on the way home. We took in the historic downtown area, walking the cobblestone streets and tapping intertwined hands to the beat of two different bands playing live in different corners of the canal area. We sat on a bench enjoying some ice cream, people-watched and walked along some nearby railroad tracks.

 

 

 

 

 

 

 

 

 

 

 

 

 

A perfect summertime evening.

I am so loved, I love so much.

 

 

 

As nice as it was to have some “just us” time, seeing our smiling little guy the next day was just as wonderful. Duders, your Momma and Daddy are refreshed and in love, and everybody wins in that equation.

You are so loved, my two guys, so loved.

Love, love, love.

10 months old

In just two months, Zack’s age will begin to be measured in years — not months and certainly not weeks or days. In just two months, Scott and I will celebrate the one-year-anniversary of the most important day so far in our life together — and all of the ups, downs, excitement and apprehension, nerves and fright, fear and most definitely love that we received with it.

 

 

 

This has probably been my favorite month with Zack so far — there has just been so much development and new achievements and the Z-Man is really starting to show his true personality, and all of the smiles and babbles that go along with it.

Zack’s physical therapist Miss Kathleen just left after Z’s weekly therapy session and we talked about my most favorite letter — “I” for Improvement. (Other options include “SI” for Slight Improvement and “M” for Maintaining Skills. I much prefer the “I.”)

 

In 45 minutes, Miss Kathleen got to experience, Zack-initiated kneeling, sturdy sitting, babbling, reaching and putting weight on his legs in a standing position (with assistance), all while I sat nearby grinning like a fool, filled with pride, not taking an ounce of this for granted.

Yesterday, the Z-Man sat for nearly an hour in a highchair, unsupported, eating his first adult food (french fries, grilled cheese and pasta pieces, oh my!) while I sat in half-shock. Thankfully, we had Z’s future prom date Olivia and her Mommy Julie there for support for both of us.

 

 

 

 

 

You see, it’s like everything has clicked in the past couple of weeks. We fought so hard for sitting skills and here they are, like it’s no big deal.

 

 

 

 

 

 

 

 

Earlier, there was a typical scooting backwards across the living room floor, an enjoyable yet frustrating activity that makes our Little Big Man want to creep forwards. He’ll get it soon, I know. I’m not even worried anymore. Gee, that only took almost a year!

Life is good.

 

 

 

 

Early summer heat waves have given us plenty of sunshine to soak in on walks and gatherings with friends.

I think, if it’s possible, our son is even more handsome in sunlight, his light blonde hair turning a pale white and his bright blue eyes searching for birds to follow, grass to feel, people to watch. As sure as the sun is shining on these days, the sunscreen is slathered on and the stroller or blanket come out to signal a fun day outdoors.

 

 

 

 

 

 

 

And the best part? There’s still no one in the world who can compete with his Momma and Daddy when it comes to love and fun.

 

 

 

 

 

 

 

 

We cheer him on when he rolls and rolls, pick him up when he falls from a steady sitting stance and he rewards us with quiet bonding moments filled with hand holding, high fives (his newest trick!) and the best hugs I’ve ever experienced.

 

 

 

 

 

 

I want to hit the pause button sometimes and in some moments, but I know I can’t. So I go with the flow, go with my guys and love up and live up every second I get.

The time is flying and I know it’s only going to go by faster so I make sure that I live in each and every moment.

 

 

 

It’s been an amazing month.