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?

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The FYI and that tree

Kindergarten registration, perhaps particularly for a child with a disability or handicap, is not for the weak at heart. I hesitated writing this post because I know this has been a redundant topic and I fear that it comes across as only negativity regarding Zack and our journey. Not my intention at all.

It was supposed to be 15 minutes of a quick screening, I was told. We were excited to finally have one of us┬ásee the inside of the “home school” for the kids (where Zack will attend is still up in the air). After our issue with the registrar’s office last month, I found my anxiety level in the last few days rising steadily. Still, I kept my chin up and my mind open and drove the mile and a half to the large brick building.

We took a photo out front and marched up the front steps, all three of us counting together. We were greeted in a lobby filled with Cat in the Hat cut-outs and smiling children.

And then we were given a packet, instructions for a six-part circuit in the gymnasium and, right on cue, Zack ran down the hallway and wouldn’t come back to me, smack in the middle of a handshake with the principal. The first stop after scooping him up and talking about danger and listening, was simple — letters and colors and shapes — the table where he’d impress and prove wrong the challengers.

He didn’t speak a single word. Not his favorite color or the first letter in his name. A Kindergarten teacher at the school shrugged it off and told me it was no big deal and sent us to the next station. He wouldn’t even sit down at the table where all he had to do was match letters and name the item in a picture. At the nurse’s station, a middle-aged woman asked questions about immunizations and I don’t know if she didn’t make eye contact because I was already holding back tears or if the tears came because I felt her give up.

At the top of Zack’s checklist, an hour later and now with “yes”s and “no”s alike, was a tiny yellow Post-It. “FYI” in large block letters. And the name of the LifeSkills class in another school miles away. At least they were kind enough to add a question mark, but by now, visions of a dismal, windowless room in the basement were already popping into my mind. The other school, the guidance counselor said as we left, ink still drying on our packet, “could be lovely, too.”

On the way out, Zack counted to 12 on his own and pointed to my Jeep and said “Momma’s white car.” I cried in that parking lot while the kids ate their gifted lollipops and attached stickers to their shirts.

I hated Down Syndrome more than ever before in that parking space under a flowering tree. I never even thought Kindergarden would be a blip on our radar this year. And now, the same strangers who assured us that ZMan could thrive in an elementary school, maybe even a regular classroom, go ahead and go through the process, what’s the worst that could happen? — Those strangers already counted him out or counted on this. I mean, FYI.

It’s not the recommendation that he does X or Y; it’s the getting there wondering if you’ve done enough.

The worst that could happen? This. This parking space and the phone call to my husband. The helplessness and the hopelessness. The reminder that everything is a battle and some battles can’t be absorbed by a lollipop and his Momma.

My friend is wise and calming and she told me today to “try not to borrow trouble.”

So I lay my worries on the ground and cover them up and plant something beautiful in their place. We will cherish and nurture the good that comes out of this mound of dirt and we will see where it takes us in these next few months. And we will grow. Perhaps into a flowering tree to harbor fears and shelter worries.

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We grow some flowers

I am certain I’m jinxing us but I’ll say it anyway: I think we are healthy again. After two rounds of a flu-like illness simultaneously battling two rounds of a stomach bug, we bought stock in Lysol, lost school days, got our schedules out of whack for nearly eight days and most definitely lost Mommy’s last shred of sanity. 

But today, my kids laughed their belly laughs and fell back into their old habits. Zack got on his lil van to school and even returned home on it as opposed to sick in my backseat. 

We spent hours outside yesterday, blowing bubbles and playing games and in that helpful sunshine we were all put together again. 

A tentative text to Zack’s aide asking about his day returned a “He did great!” and gave me such relief. 

And while pretending to put her animals to bed, Addie called me. 

“You’re my best friend, Momma.”

When I asked her why, she told me because “We grow some flowers and you take me to adventures.”

One of my momma friends and I were talking about how much you take healthy kids for granted until they are down for so long. And we also take for granted belly laughs and adventures and growing flowers and. Blowing bubbles. 

So here’s another restart, with healthy babies and happy momma. 

   

     

And eat it, too

I heard Zack making some noise right on cue this afternoon, signifying the end of naptime.

I slugged one more sip out of my coffee mug, put the laptop away and did a little stretch at the bottom of the stairs. As I rounded the corner on the landing, I stifle a laugh when I see two mismatched Zack socks that have been pushed out from under his door.

I open the door and hear him singing.

He is sitting at the bottom step to his Zook Nook reading and comfy area of his closet, singing Happy Birthday.

He sees me, smiles, and yells, “Happy Birthday, Momma!” (It’s not my birthday, sidenote.)

I tell him thank you and make sure he is still wearing pants. (Pants, no; diaper, yes)

He holds out his hands to me like he’s cupping a secret.

“Present, momma.”

I pretend to open a wrapped box and exclaim my love for this invisible gift.

I ask him what it is as we walk down the stairs.

“Cake!” he says with a smile. “Yum!”

He pretends to rub his belly and I rub mine.

There are a thousand moments like this a week.

A thousand times I pinch myself or say a quiet “thank you” to the stars or tuck away a memory to retrieve in the middle of a horrendous diaper explosion, stomach bug, temper tantrum or begging for a snack.

A thousand times I feel like I shall have my cake and eat it, too. Even if it’s invisible. Especially if its invisible.

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.

A journey of faith

The lil Zee Family has come a long way, lived a thousand lives, journeyed a hundred journeys. One of these journeys has been a journey of faith. In the near decade (!) that I have known Scott, we have had our ups and downs in terms of belief. Usually one of us was doing “well” — that is, learning more, reading more, attending more. The other wasn’t quite on the same page.

When Scott and I experienced our marital problems in 2013, I found myself again questioning faith. I’ve always believed in fate and in destiny but I have found myself constantly questioning the plausibility of a God and a religion and a world in which so much bad happens and so many questions are left unanswered. I mean, I studied journalism — for me, my world is all about getting answers.

It was actually seeing the positive change in attitudes, personalities and just pure joy in some of my younger coworkers that got me trying this Faith Thing again. I listened to their stories and their discussions. I joined in, slowly, with questions. Then I attended an informal study group of theirs. And soon, I couldn’t stop thinking about it, about all these stories and names and how they suddenly made sense even to me.

When we moved recently, one of the first things Scott wanted to find was a home church. We literally picked a random church to start (as in it was very close to our new home, looked beautiful and seemed a good place to begin) and an even more random denomination (Methodist, or, as we advertise it, the perfect balance between our two backgrounds. Scott grew up in the Brethren churches (think of it as a pacifist cross between Mennonites and Baptist, with footwashing, lots of music and an emphasis on community service and brotherhood.) I grew up with tradition and ritualistic Ukrainian Orthodox and Catholic experiences.

We were so impressed with our first Sunday there, and then with how people remembered our names (all four of us!) and where we last sat when we returned a week later. We were so glad when the pastor visited us at our home that week just to get to know us. Services make you think and answer questions instead of raising more of them.

And so, months later, it seemed only natural when this first shot-in-the-dark church and its pastor asked us if we wanted to join officially.

So, this weekend, our family stood up at the front of the church. Scott and I made promises. Zack and Addie received water from our beloved pastor and were introduced to our congregation as family members watched from the pews.

I still believe to an extent in fate and destiny. But now, I feel comforted knowing that there is faith. Our faith, to share together and learn together, like the late night Bible readings and discussions we share.

I am far from perfect and still wish to be a better Christian, especially to lead a better example for my children. But I am trying. And I am on this journey. And one day, Zack and Addie can choose their journey, too, whether it’s here or somewhere else or nowhere at all. They have the foundation for it.

A banner hangs in each of their rooms reminding them of this day and reminding me, every time I walk past their doorways, of a very unlikely and special journey.

Love you, Addie

I feel like sometimes all of my conversations and posts are centered around Zack lately. There’s just so much going on with his schooling, support, changes, that I forget to talk up a storm about his little sister. So consider this a love letter to Addie.

Dear Addison,

I figured you out before you were born. When you were still in my belly, I told everyone that you were going to be a handful. You haven’t let me down.

You are, in many ways, a representation of who I wish I could be. You are stubborn and strong-willed, strong and independent. You are very intuitive and offer the lesser-considered side of any debate.

And your imagination. I love your imagination. I hope it is a hint to a future of creativity and story-telling.

You can turn a blanket into a cape and a tissue makes a tiara. You soak in words and phrases, mull them over ever-so-briefly, and then spit them back out at us in a very short amount of time. You are witty, much more so than most adults I know.

We just recently overcame a period of great difficulty. You pushed my every button and tried to speak your mind, in defiance to me, at every turn. But it seems as though we’ve moved on from there, at least for now. And suddenly, I see this other side of you that I didn’t know you possessed. And it’s actually a large part of who you are right now.

There is love and kindness that comes from you in sweet words.

“I make you happy” is one of my favorites. You tell your favorite toys “I love you and you’ll never be sad again.” I don’t know where you pulled all of that from, but I love that sweetness.

You can be selfless, too. Offering to watch “Mommy’s show” when Zack is at school and helping me so much with cleaning up toys and clearing the table.

I’ve had this semi-irrational fear that somehow Zack’s diagnosis of Down Syndrome and all of the special help he needs will negatively impact you; and it saddens me because you didn’t ask for this.

But there you are, playing with his therapists and his aide, coloring in the next room when Momma almost loses her mind at a school registrar. You may wind up in the same schoolyear as Zack but in a different building in the district. Or you may see firsthand walking the hallways the sort of stereotype that follows your big brother. I hope the sweetness you have started to show continues to grow in your heart. And I hope you know that regardless of Zack’s potential or limitations, you will always have time with us and a special place in our hearts. You are no better or worse than him. no more or less loved. And your possibilities are endless. We will fight as hard for your future as we will for Zack’s.

You have only very recently begun a love for girly-girl things like skirts and princesses. You love to twirl and make up songs. Yet you still have this tomboy side of you, a little rough around the edges, kicking snowpiles in your boots and eating every single thing that’s placed in front of you.

I love when you hold my head and ask for a kiss.

I love brushing your hair, thin but long, and asking your vote for ballerina bun or braids.

I love how you worship your Daddy. And how only he can paint your nails and how you show people those nails, days after they begin to chip.

Just keep being you, beauitful girl. Stay smart and strong.

And know that you have taught me so much. I cannot wait to watch your journey continue. And to see the woman you turn out to be and the things I continue to learn from you.

I love you more,

Momma