The Skating Rink

We’re all about adventures.

Starting on New Years Eve. (We didn’t wait for some silly date on the calendar to regroup our family this year and it was WONDERFUL).

So despite a terrorist issue in Rochester on Dec. 31 (sigh), we trekked out as planned to the nearby skating rink for our family’s first ice skating adventure.

Addie has been gliding around the house in her “skate shoes” (Elsa sneakers) for weeks now and was completely in awe when we told her our plan.

If you wanted to fast forward about 10 paragraphs, you’d learn this:

It was an incredible experience in the end. But it took some work.

 

We were toying with over-stimulated children, funked-up routines and the beginning of bedtime, not to mention potential crowds and a new activity. Scott and I hadn’t been on ice in probably 10-plus years and the kids have never seen it other than at a hockey game a couple of months ago.

 

The crowds weren’t too bad and we got our admission and skate rentals with little fuss or delay.

And then the skates.

I feel like one of the many parenting classes they should offer when you decide you want to have children (in addition to Do You Have Common Sense and Don’t Do Stupid Things That Will Get You on the 5pm News) is How to Put Skates on Young Children While Maintaining Some Calmness and Not Creating a Scene.

Addie’s went on relatively easy, especially once I reminder her that she’d be on the ice in a few minutes. She stood right up and was walking in the skates like it was no big deal. Shaking my head, I tell ya, this kid.

But we had some trouble with Zack. Our initial pair we got was too small. He was already in Meltdown Mode after the first attempt and nearly lost his mind wailing on the carpet of the locker room as we waited for Scott to return with the second pair. It’s all good, because we got them on and soon enough, we were marching to the Kiddie Rink like the Jets and the Sharks in the opening scenes of West Side Story. I’m pretty sure we thought we were a big deal, with a bit of swagger and some cocky smiles. Fools!

Scott took Zack and soon realized the Z-Man was not going to do a thing. Not one ounce of balance or coordination and 40 pounds of scrambling, laughing kid in his arms. Addie wasn’t too bad, but just got way too excited and was pretty much attempting a triple axel on her first step on the ice. I was much worse a skater than she was, so our first lap (OK, our first eight) were PAINFULLY slow.

Scott was so worn out from essentially hunching over and carrying Zack on the ice that the two guys took a break. As Addie and I came around the straightaway towards them I saw Scott and the grandmother-woman-watcher next to him interacting and she was waving towards her granddaughter and family on the ice, using a red chair-like device that’s an option for teaching skating.

And she gave us their red chair. She grabbed my hand as I steadied my hand on the wall in front of her. Scott was positioning Zack in the red thingy-ma-jiggy and I was trying not to feel the screaming chant of “Down Syndrome comes to skating rinks, too!” And this stranger patted my hand and said “Your family is beautiful. I hope this makes your night a special memory.”

And then Scott’s back was less sore, Zack was giggling lap after lap and Addie was showing off for the five older girls she had already made friends with. And I was there, the mother of this crazy clan, taking it all in. And trying not to fall down and really ruin the moment.

The craziest part of it all?

That we’re looking into ice skating lessons for BOTH kids.

 

 

 

The sweetness of Autumn and awareness

A springtime of transition, a summer of moving and fresh starts. And now, finally, my desired and treasured normalcy.

Oh, normal. What are you?

More obvious than the 11 other months, my version of “normal” looks me straight in the eye as we celebrate Down Syndrome Awareness Month with friends in the National Down Syndrome Society and friends across the country doing their best to dispel myths and undo “R”-words.

My friend Nicole is using her love for Zack and the eye-opening experience we’ve brought to her in beautiful capturing families living with and loving DS in the Boston area. You can see some of her work here.

And in just a few weeks, she and I begin an adventure together, documenting people with DS from across the East Coast and of all ages for the NDSS annual Gala event that takes place in March and features some of their best advocates, supporters and fundraising of the year. It’s an honor that leaves me in disbelief. How five years ago we were still scared and wrapping our minds around a diagnosis that offers endless questions and few answers. And now, my camera and I get to be a part of something that brought us and brings to so many knowledge, education and a reprieve of fear.

Zack is doing fantastic. He never ceases to amaze just when we need to see it most. A couple of months without school and in a new environment took some getting used to for all of us. We’re still considering the many options that our fantastic school district is offering us, and in the meantime they are providing a tutor and some therapy services here in our home every day. It’s a way for him to ease back into a day of lessons and hustle and bustle and learning new things. And it also buys us some time to find the best option for him without feeling the pressure to make that decision too quickly.

He professed his love for his tutor within their first 30 minutes together. That’s just his style. And I used to think, “Wow, I waited YEARS to hear those words and now he gives them away so easily.” I used to almost sadden at the way he shared his hugs and kisses. But yes, I’ve realized how spoiled our large group is. The group that receives a giving love. A love with blue almond eyes and squeezy hugs. A love that comes in wet kisses and little belly laughs. I’m so lucky to be one of the many that he loves. And feel so blessed that maybe we had one small thing to do with that endless love.

And Addie is incredible in so many ways. She is smart and witty and has us in stitches on an hourly basis. She has an alternative personality named “Squerta” who has a yellow box with a squeaky lid in which she stores her glitter. I’m telling you, I have definitely been writing down a lot of her sayings and will think of you when I’m a millionaire from the best-selling novel I’ll write with them!

She loves her brother. So much. If he falls or is sad, she’s immediately got an arm around him. If he’s laughing, she starts giggling. If he’s sleeping, she wants to lay next to him and tuck him in. And it’s almost like she “gets” it — the DS thing — I can almost see the wheels turning when Zack’s tutor comes to “play” with him and she can’t join. She really doesn’t protest it. And when we go to see his schools, I watch her spy kids in wheelchairs or walking down the hallway with hands in teacher’s hands and I swear part of her understands the whole thing.

zooks-7 zooks-15 zooks-36

During the move, I found the paperwork confirming Zack’s DS diagnosis and it brought back a flood of emotions. The squiggly chromosome diagrams and brochures with funny initials that brought about panic and fear and sadness and grief and then back around to panic. Those days where I knew where I wanted to be and how I wanted us to live our lives but didn’t know how to make it happen.

And sometimes, I’m at a window or photographing an engagement session at a park and I’m part of a spectacular sunset with bright colors only possible in the Fall. I can talk to near-strangers or new friends about DS and about our first-born who has taught us immeasurable things. In the rare mornings when I’m up and about before the first stir of a child, I find myself on our deck in our new house, sitting on the swing with a shiver from the dewy Autumn morning. And I look around and realize…

That I am where I wanted to be.

zooks-42-2 zooks-43 zooks-46

A friend of mine from years ago recently found out their baby, due next year, has DS. She called me in tears one night, the first time I heard her voice in nearly a decade. And in her, I heard the me of five years ago. And I just kept telling her over and over again the only thing for sure I know to be true:

This is not the life we had planned.
But, gosh, we have such an amazing life.

We have an updated fundraising page in Zack’s name. You can donate $1 or $50 or whatever is comfortable, in honor of Zack, whether you’ve received one of his bear hugs or just can’t wait for your turn. Every single penny goes towards the National Down Syndrome Society, which provides not only peace and resources for new and expectant parents, but also research on Down Syndrome and incredible events throughout the year and across the nation. Women like NDSS President Sara Weir and so many others that are almost like family have brought such comfort to our lives. They work tirelessly, constantly riding trains back and forth and sending emails to and fro, just to make a difference.

You can visit our page here.

I see you…

You’re over there, pushing the cutest little blond boy on the red swing. He’s smiling a sleepy, peaceful smile that gets bigger when you surprise him with a tickle up his legs.

I see you twist around anxiously to watch a ponytailed three-year-old hop up fearlessly to the top of the tall slide, the one you think she’s too small for, but can’t convince her otherwise. I can actually see you hold your breath as you let her have this independent moment and try to keep it cool for the giggling boy next to you.

I see you.

You’re glancing at the little boy’s almond eyes with such a mix of love, compassion, worry, fear, hope, I can almost feel the heaviness in your shoulders. My gosh, that love. The pride you have when he makes a statement third-person about “Zacky” wanting to swing or needing a drink. You love those muffled words, those little phrases that you understand better than anyone else and that have taken hours upon hours of therapies and practices.

You’ve scooped up Miss Ponytail, twirling her and brushing back the fine strands that never stay in place. Her laughter inspires your laughter and Big Brother travels over to join the fun.

I see you.

Your embarrassment over the tantrum that was much worse to you than anyone else.

The mix of fear and exhaustion when he runs away, not understanding danger. You understand it too well.

I can imagine you holding a dance party in your living room. Some CCR on Pandora and four little hands mimicking your shakes.

I see you when she jumps up in bed at 5:45a.m., full of energy and questions. Your mind hasn’t woken up yet so its all about pulling her in close and smelling her hair and squeezing her tight.

I can imagine the way you internally jump for joy when, instead of his usual “No Kiss-a Me,” he asks you to stay with him in bed at nighttime and you pet his hair and caress the freckle behind his right ear and sing his favorite song.

I see your hands. That push swings for contented boys and steady brave little girls. That wipe tears and create imaginary pixie dust in different colors to solve different problems. That pick up strewn toys and flatten PlayDoh.

The hips that have held infants then toddlers and now 40-pound kiddos. They handle bouncing camera bags and your treasured DSLR.

Eyes that pore over chromosome diagrams and research papers and photo editing. That attempt the stack of neglected magazines.

I see you. Doing your best and trying so hard. You do your best when you don’t even try at all, when you just let it be, let it happen.

I see you. Do you see yourself?

2015-07-14_0002

Normalcy and the foyer

The other day, Zack returned to school after missing an entire week of school due to snowdays and a cold. It marked the EIGHTH week in a ROW that he didn’t go to his Pre-K program all four scheduled days in a week.

We did the best we could do with cabin fever and crafts, coughs and lots of coffee.

But there’s something about rounding that corner, you know? Everyone has their corner. For a tired, exhausted, overwhelmed mom of two cranky and bored kids in a miserably cold winter, that corner was the bus pulling in front of the house Monday morning and a smile creeping across both my face and Zack’s.

Even better than that bus pulling away and the calming sense of routine returning, was its return a few hours later.

Zack was smiling when I opened the door and yelled, “Call Uncle Brick!” which made me laugh so hard. He insisted on walking to the door, not being carried, and wanted to open the mailbox to check for “Momma letters”, too. I was so giddy with happiness. And it was in the high 40s that day, too! Hooray!

Addie was at the front door, blowing raspberries against the glass. Zack met her on the other side and blew drool all over the window, too. (Note to self: You still haven’t cleaned all those prints, oops!)

We opened the door and she squealed a thousand exclamations.

“Zack, you’re home!”

“I’m so glad you’re home!”

“Come into my playroom.”

And then, she grabbed the zipper on his coat, which he had been struggling with, and said, “I help you?”

He smiled and nodded, leaned over and kissed her forehead.

I froze.

The newspaper in my hand, only one boot off.

She pulled the zipper down, he tore the red and black jacket off and threw it across the room. They both laughed. I couldn’t help but giggle, too. And then he wrapped his arms around her.

“Home, Addie.”

Turned to me: “Schnack, Momma, please!” (Typical, haha)

And she returned the hug. A little ten-second bear squeeze. I still only have one boot on.

And she held out her hand, which he grabbed. And they marched into the living room and sat down at the couch together.

I heard Addie ask him if he was a good boy at school and that laughter from my throat made me take the other boot off, grab the backpack and the thrown jacket and walk back into normalcy, happiness and the appreciation of the little things.

‘Love is who we are… “

I am listening to Sara Bareilles’ “Love is Christmas” and “Winter Song” on repeat with giggles in the air and assorted play food on the floor. My daughter offers me a “teapot” and my son is singing random words to the song with a smile on his face.

We are preparing for a wintery coating and a couple of days without Daddy. My heart is content despite the shoveling and the missing I’m about to do.

“I don’t care if it’s gonna rain, our little room is warm and stable…”

*
We shared an amazing belated Thanksgiving celebration with 10 of the best loved ones. Giggles and good smells and gifts and delicious food. People who traveled far and wide just for a few hours in our new home.

We were cramped and it was loud but my gosh, was there love. In chickey kisses and hand pats and camera clicks and bites of yumminess.

“I don’t care if the house is packed or the strings of light are broken…”

*
One of my bestest friends and my favorite 2014 bride, Kacey (the Caboose!) and her hubby Drew came to our house on Saturday for a visit and again, full heart. They trekked up the TurnPike in a torrential downpour but arrived with smiles and excitement. We shared coffee and local pizza and silly games with the kids. We played adult games after bedtime for babies and even shared a glass or two of wine. We watched their wedding video and laughed over how I messed up the bouquet not once, but twice! Addie thought Kacey was a princess and both kids were attached to Drew the entire time. (The cat, too!)

I am so constantly grateful for loved ones who make the effort and sacrifice just for some time in our world.

“All we need is your best my love; that’s all anyone ever wanted…”

*On Sunday, we went to a fun Breakfast with Santa event. I finally located the local Down Syndrome support group, PODS of NEPA, and we were invited to their event this weekend.

We weren’t sure to expect, and honestly, I had to do some convincing to get Scott excited about it at all, but boy, were we surprised.

We walked through the doors of a catering hall 40 minutes north of us and before we spotted the beautiful decorations and centerpieces, the magnets and other 3-21 giveaway items, the kindness of strangers, we noticed hundreds of people. At least 50 families who “get it” or “got it” or are “getting it” just like us.

Babies with almond eyes and adults with kind smiles; verbal and nonverbal kiddos of all ages; talk of aides and school and independent living.

We sat with a family of four — a nine-year-old boy with DS, his 12-year-old big brother and their mom and dad. By the end of the morning, with coats on, we were celebrating their son’s bravery in finally trusting Santa’s lap and exchanging business cards and well wishes and promises of friendship.

I just kept looking around, whispering “Look at this, my love,” to the toddler on my lap.

I watched little Alex stroke his Mom’s cheek with a piece of hair he pulled from behind her ear and told her how Z-Man does the same thing to me. We shared one of my favorite smiles and a nod.

And while Zack was quite happy to meet Santa, Addie was not so pleased — at least not until the snowman character picked her up for a few minutes. Sorry for crashing your photos, other kids! She tells us on repeat still:

“Addie cried… I just wanted to see Snowman… Snowman said ‘hi’ to me…”

Even after five goodbyes, when I spotted Alex’s mom in the lobby on our way to the car, I went in for the sort-of-creepy-mom-who-needs-to-get-out-more hug. And she hugged me back tightly. And Scott and I both keep saying how we feel much less alone now.

“I’ll be your harvester of light and send it out tonight so we can start again…”

I think as I get older, it’s not that I realize what’s truly important — it’s simply that I appreciate it all — the good, the bad, the easy, the hard, the dreams and the surprises.

Even something as simple as a makeshift tea party with a snowman-phobic little girl and her hair-petting big brother is an absolute treasure.

We have more Christmas carols to sing, snuggles to snuggle and traditions to turn into memories.

My life is very good. My life is filled with love.

You’re FOUR!

 

I don’t know if it’s more difficult for me to accept that you’re four years old or that I’ve been a mother for that long.

Zachary, you made me a mother. It’s the most amazing title I will ever own. I am forever grateful to you and to this beautiful, crazy, amazing world for bringing you into my heart.

It’s not the motherhood I imagined.

Because it’s better.

 

You bring love and joy to all who meet you. Tough little bullies melt when you become their friend. Boys who were just getting yelled at by your teacher then bear hug you in the hallway just minutes later, calling you Zacky. They are so excited when you enter the classroom. I know very, very few people who actually bring light to those around them the way you do already. Imagine when you’ve mastered speech and communication? We will all be incredibly blessed to feel your love in other ways.

 

I will never in all of my life forget how my heart felt the first time I saw you. An operating room is not the typical place to meet the love of your life, but there you were, those dark grey eyes meeting mine as a nurse held you. You were big and quiet and you spoke to me with those eyes.

Just a couple of days later, the twinkle in your eyes turned out to be a sign of Down Syndrome. I sat at the edge of my hospital bed that night and stared at you, brushing the top of my hand along your forehead and hair and trying to wrap my brain around the news. And then, without warning, your eyes just opened up and twinkled up at me with a half-smile. We would be OK, we would be OK, we would be OK.

And that was that.

 

You are not Down Syndrome. You are not special needs. You are not even a “special” child… you have tantrums, you are strong-willed, you sometimes don’t listen and you sometimes push your sister. You are an almost-four-year-old. My almost-four-year-old.

In recent weeks, your speech is taking off. We’re hearing two and even three-word sentences here and there; you’re responding to questions and communicating needs and wants. I don’t know how to describe what that means to us.

 

You love the waves on a beach. It’s about the only time I see you truly fearless and completely uninhibited. You hold an adult’s hands above your head and leap in the air with a shriek with each crashing wave.

 

You’re so loved at school. In a couple of weeks, we have to say goodbye to this school and these friends and part of me aches. These teachers and your classmates have embraced you so beautifully and adore you so much. Their love and your growing knowledge and confidence have cemented the fact that yes, you can achieve ANYTHING and everything.

I have been incredibly touched by the friends who have come forward in the wake of our announcing our relocation. The one thing they all keep telling me? How sad they are that their children will not have a chance to grow up so close to you and with you; to have a chance to learn about the love you bring into this world and the lessons you can teach kids and parents alike. I can’t wait until you understand what a huge and beautiful thing that is; what a light you are in this world.

 

When we were visiting relatives in Asbury last month, you kept running to a nude framed sketch in the one room and yelling, “FALL DOWN!” We were all in hysterics. You were so concerned about this woman laying down on the wall.

 

Due to your little sister’s screaming at bedtime, you’ve gotten the “Big Boy Bed” in the Playroom at bedtime. The other night, I laid next to you and you said, “Sing!”

Sunshine?, I asked.

“Sunshine,” you smiled.

So we sang our song, “You are my sunshine.” You grin from side-to-side at that last “a-waaaaaaaaay.”

“Star?” you asked.

Twinkle?, I asked. You nodded.

So we sang Twinkle, twinkle little star.

And you put your arm under my head and patted my hair.

When we were done singing, you simply told me “Night-Night” and gave me a sloppy kiss on the lips.

 

 

Some days, I look at you with fear and ‘what if’s in my heart. But those days are few and far between now and I’m tougher and better at pushing scary thoughts (heart problems and low life expectancy and college and marriage and speech and mainstream school, oh my!) far, far away.

Most days, I look at you with pride. A pride that swells so much it all but suffocates me via love. I never knew these feelings existed. And I certainly had no idea that a 40-pound, four-year-old Little Man would be the one to bring those feelings into my life.

 

I will fight for you every day of my life with every bit of knowledge and power I can muster.

 

Z-Man, I love you. I love you as much for who you are and what you do as I do for what you make me and how you change me for the better.

I love you, I love you, I love you.

 

 

 

 

 

 


20120612-145553
untitled shoot-055 untitled shoot-081 untitled shoot-074 DD Wedding (1 of 52) DD Wedding (48 of 52) Adventure (54 of 96) Excursion-338 Excursion-281 Excursion-521

 

 

 

 

 

 

 

 

 

 

 

 

 

Lil snippets

***

Addie’s counting goes something like this:

“1…2…4…5…” It always ends with a clap.

 

***

The other morning I went in to the kids’ rooms (separated by glass French doors) and found Zack sitting next to Addie in her crib, rubbing her head and giving her kisses and saying, “It’s OK, baby, It’s OK.”

Now THAT is a great start to your day.

 

***

 

I’ve returned to writing. Very minimally.

As a freelancer for the Life section (human interest/features) of the newspaper where I used to work.

My first three stories are under my belt.

It’s good to be back.

 

 

***

 

A couple of weeks ago, I took a last-minute trip two hours away with a friend. And came back with a soul sister. The reasons were not what I wanted — I mean, I’d much prefer a fun story about Chip ‘n’ Dales or a few shots of tequila. But 11 a.m. margaritas and deciding who the man in the relationship was is almost just as good, maybe better.

Where’s the parking garage?

I brought a notebook!

 

***

 

Whenever Addie is stuck (which is often because she is a little monkey), she proclaims, “I SUCK!!!”

I can’t tell you how hard we laugh at this one.

“Oh no, Addie, you’re very amazing. Oh, you’re so smart and lovely.” Tears streaming down our face.

“I SUCK!”

 

***

 

I love our “other daughter” Aubrey more than words can say. She visits with us once or twice a week and she is like part of our family. (Also the most well-behaved child, haha!) I love her witty sentences and exclamations and the way she dances with Zack and converses with Addie.

 

***

 

Zack made a friend named Lily at his school when he first started in August. Lily first met me while I waited for ZMan in the hallway. She looked me up and down and asked who I was and I was so taken back by this tough lil lady that I had to laugh.

“I’m Zack’s Mommy.”

Zack’s not ready, she said. I’ll tell him you’re here.

I looked for the camera and the Candid Camera crew. That’s funny, I thought.

And she did bring him back, leading him by the hand and helping him put on his shoes. I’ve seen them hug and she always says goodbye to him when I pick him up at lunchtime.

Then a few weeks ago, I was waiting for him and she was in the hallway.

“You know, Zacky’s my best friend,” she told me with a smile.

“Really? That’s so nice. How come? What makes him a good friend?”

She thought for a second. “Well, he pushes me sometimes, but I push him back. I love him.” And she marched off, leaving me crying in the hallway in a moment that was much grander than a four-year-old’s from-the-mouths-of-babes moment.

Lily is off to a Big Girl School while Zack stays where he’s at for another year. And I’ll miss her. She is, for however long or however little, Zack’s first self-proclaimed best friend in a world that I thought would be too mean and too hard.

And she still asks about him. Her Mommy wants to set up a surprise playdate for the kiddos. I can’t wait.

 

***

I’m taking the kids on a grand adventure starting tomorrow. We’ll be visiting four stops of friends and family in NJ and MA. There will be beach time and lots of photo-taking and hugs and chickey kisses hopefully a glass of wine. I’m excited for our our first little vacation this year. I’m sad Scott can’t make it (because of work) but am so grateful for the life I’ve been given and the opportunity and love and how all the doors that have closed and opened have led me to this overpacked car.

 

***