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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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.

Asbury Adventure

Have you noticed a theme these past couple of months?

The Zee Family has been having itself some adventures.

Adventure.

Just saying the word brings me peace and makes me think of ocean waves and warm embraces and laughs over wine and that warm, fuzzy feeling in your heart.

Adventure.

 

So all four of us (yay!) snuck away for a few days in the middle of a life upheaval (more on that later) to escape, forget and breathe. We stayed at the home of my mom’s cousin Steve and his beautiful-inside-and-out wife Melaney and another cousin Andy and were joined by my cousin (Steve’s daughter) Rachel and her daughter April, who is just a month older than Addie. We even had a visit from Uncle Bwick one night.

Steve and Melaney are saints. In a matter of minutes, their gorgeous historic home that they have renovated so beautifully was turned upside-down with a loud parade of marching toddlers traipsing around endless bags and toys brought out of the woodwork of two well-traveled SUVs. From that moment and through the temper tantrums and time-outs, the seemingly-endless screams of “Share!” and “No touch!” and the smelly diapers and long nap processes to the line of six adults scampering for showers after beach time, they remained patient and calm and so considerate and generous. We realize everywhere we go that our crazy family, no matter how much we try not to be crazy, can be overwhelming and we are so appreciative of the loved ones who allow a little craziness into their lives for a day or two.

The weather cooperated so nicely. We enjoyed a couple hours at the beach down the street our first day there, along with some great playground time. The kids almost immediately all started playing so well together. It reminded me so much of my childhood and the family gatherings where all of my cousins, all of us about the same age, just instantly bonded and played and later shared secrets and had great sibling-like fights. And it made me wish that our kids can have what our parents’ generation had, where cousins really were like siblings and knew and loved each other so well. It will take work, but I hope that my kids know and love their family so much, too.

There was the Great Raccoon Adventure during our stay, too, but it might still be too early to joke about that one. But really, I hope we can all giggle about this one in the near future. All part of the adventure!

Our second day was a near all-day beach day and the kids surpassed all of my expectations. They listened, they were in great spirits and we made it much longer than I thought.

I have so many Happy Heart moments from our days there.

I sat at the head of a long dinner table at a delicious Italian restaurant, my babies and husband on either side of me, looking down a long line of amazing people. Each with their own story and journey and so many happily-ever-afters taking place. I felt so loved and so lucky.

The same lovely reminiscing took place on that sand, too. Watching Scott and his son splashing in the water as each wave brought beautiful laughter from both of them. I thanked my lucky stars for the wonderful father Scott has become in our journey and hoped both kids realize how lucky they are, too.

We had buckets on heads, and manly men with baby dolls in their arms; we all snapped photos and shared delicious meals.

At night, I was too happy to sleep. I just laid there, after the babies had finally fallen asleep and I could hear Scott’s snoring; after the footsteps above quieted down; and I just smiled. I felt the presence of so many loved ones not with us anymore and figuratively patted us all on the back for forgetting all of the world’s stresses for a few days and making the effort for family.

I believe my family(ies) is/are a huge part of why and who I am today.

It was an adventure. A great, joyful, peaceful

Adventure.

 

 

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Snippets- Vacation Edition

We had ourselves an adventure — just me, Zack and Addie (Da-da had to work).

 

We crossed five states for four different visits in about 10 days and 20-plus hours of driving. There were chickey kisses and ocean waves and everything in between.

Some highlights:

 

The most relaxing, heart-warming time sitting in Chochie’s yard watching kids frolic in dirt, hide treasures in secret corners and splash to their hearts’ content in a bright blue bird bath.

 

Snuggles nightly with two tired ones. Holding them close and re-learning their breathing and sighs. Watching little hands and fingers as we all fell asleep.

 

Addie greeting me every day with, “Good morning, Momma! How did you sleep? Addie wake up!” You can’t help but start your day on a positive note with that.

 

At nighttime, I would remind the kids of what we did that day — who we saw, where we were, etc. One night after a 4th of July picnic at my Dad’s and plenty of big cousins to play with, I asked Zack what was his favorite part. Typically, he just repeats “favorite part” with a smile. That day, he grinned a huge grin and said, “Play with kids!” How sweet.

Another night, Addie interrupted me with, “I so happy, Momma.”

 

I learned all of the words to one of the songs from a DVD we brought with us for the car time.

“I’m not ready to be a princess, I don’t have what it takes…” The kids and I can rock it out. “I look bad in crowns…!”

 

Cousins Ryan and Kevin in Massachusetts always dote on Z&A. It’s so amazing to see their love for their little cousins. They introduced the kids to some of their old toys, and a baby frog and the beloved guinea pigs, which are a HUGE hit. (We actually have to tell Zack the piggies are sleeping quite often or else they get no break from their noisy visitor). Addie snatched snap peas from Becky’s garden and took charge on a walk around the neighborhood. Cousin Mark was welcomed home from work with two squealing “hewwo”s from little people. We all laughed at Addie’s love for pickles and Zack’s sweet tooth, but mostly we just laughed.

 

Seeing my Dad and Uncle “Brick” together was so great. They are two peas in a pod. I love them both so much for their humor and kindness and compassion, wrapped up in tough-guy exteriors. Crazy fun watching them drink beers and blow bubbles with the kids on our last day.

 

My friend Nicole and her man Jeff have created a beautiful life together and just seeing her, with him, in their cozy and cute home was a delight. They’re still collecting the Cheerios we left for them in every crevice imaginable. Truth or Truth with wine until 3am was simultaneously the best and worst idea we had, haha!

 

At the beach, the kiddos surprised me. Zack went straight for the water and couldn’t be removed without major coaxing and Addie was quite content to play in the sand and sprinkle water (fetched by Momma every three minutes) from her watering can onto my toes.

 

 

There were a lot of quiet moments that made every traffic jam and long walk worth it:

The ringing laughter in living rooms and on patios and in the car;

Both kids saying,  I love you, Momma.”

Having a chance to disconnect from the rest of the world and just observe. I learned much about the babies in these 10 days.

The love and hospitality of our many hosts, who dealt with difficult bedtimes and early-mornings and sometimes my need to just stop. I appreciate your open doors and open hearts.

 

 

This was an amazing adventure.

I just love adventures.

 

 

 

 

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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.

 

***

Team Zack

Zack’s progress has always happened in waves.

For every surprise accomplishment came a three-month lull.

For every time we worked on walking and jumping and stepping, out came his first words.

When Down Syndrome enters your life and the life of your child, it is a never-ending road of questions, uncertainty, fighting and pushing.

There is no cure, there is no this-is-where-he-will-be-in-five-years.

You must find your resources (Early Intervention therapists, other parents, National Down Syndrome Society, special needs classrooms, and most importantly, yourself…); you must find your support.

And then you just dive in, give it your best, never look back and never look too far forward or you’ll drive yourself crazy.

When Zack was born, we didn’t know if he would ever speak or ever walk on his own. We had no clue if he would have major health issues or zero concerns at all (he falls at the low end of the middle — we battle respiratory illnesses for months at a time, he had two small holes in his heart that do not yet require surgery and a Man Parts issue forced a minor surgery two years ago).

At the end of the day, our prayers for Zack are exactly the same as those for Addie — that they be self-sufficient, polite, responsible, independent, intelligent kiddos and adults. That they enter mainstream school, are loved by their peers and teachers, complete high school and college, find a job that brings them joy and a man or woman who makes them complete and throw a dozen grand babies our way. We hope for graduation parties and Empty Nest Syndrome and a first dance together at their weddings.

And while we hope for the same goals, we realize the journey may be quite difficult for one (or both!).

Zack turns four in August and then we have one year before he should enter Kindergarden, maybe in our local public school system.

But maybe not. Maybe it will be in two years. Maybe three. Maybe it just can’t happen.

We realize both sides of the possibilities, but still we fight with every freakin’ ounce of energy and every bit of resources to make what’s  best for him, not us, happen.

So yesterday we met with his teacher and speech therapist from his special-needs classroom that he’s been attending two mornings a week since January.

Scott and I actually went into the meeting planning on gently removing Zack from the program as we felt he was with kids who demanded much more of the teachers’ attention than him and perhaps we just weren’t seeing the difference or the impact from there as we initially thought we would. It was a good problem to have, we thought. We were appreciative and we gave it a whirl, but hey, our boy is doing great in his “typical” Preschool three days a week!

But then we all got talking. Openly, honestly.

And we have a plan.

There is something about having a plan.

Even if it means more work or more time or more challenges at first. It’s a plan. It’s a step forward. It’s one step closer to that first day of Kindergarden at public school two miles up the road. The day I have been praying for and fearing for quite some time. Where I will lose my —- and bawl at the astonishing journey. But we’re not there yet, so hang tight Ole Emotional Momma.

So, in August, Zack will be trying the afternoon class at this location four days a week, while still maintaining his mornings at the other school. The afternoon class has more “advanced” kids and is a bit more challenging. And it’s primary focus? Kindergarden preparation.

It’s a no-brainer.

Four days may be too much, both schools might be too much. But, it’s my style to go all the way in and retreat a bit if necessary.

A woman I’ve only just recently met through Mary Kay wrote me a letter for Mothers Day. She follows our family through social media and her asking about Zack and Addie is always the first thing to happen when we are in the same room. That means a lot and I’ve always appreciated that.

But then, this letter.

I had actually received it two days before but in all the business of the week, it stayed tucked away in a bag until Wednesday.

This amazing woman of faith and strength shared that she had two special-needs children herself.

She gets it, I understood.

You see, just like the unwanted Motherless Daughters Club you are initiated into without request, so too is there a Special Needs Children Club that is scary yet so rewarding. The bond between we mothers is indescribable.

Anyway.

“I understand the day-to-day struggles and the day-to-day victories,” she wrote. “What some parents see as a small accomplishment, we see as a victory dance worthy.”

I smiled, I cried, I laughed out loud during her letter.

“God knew exactly the kind of Mom that Zack would need,” she shared. “The kind of Mom that would love him, protect him, nurture him, and yes, even fight for him. The kind of Mom that would get that glow in her eyes when she talks about him, post his artwork on FaceBook and sell Mary Kay so she could be home with him and his sister.”

The day I read that was a Battle Day. Battle with the kids’ strong wills. Battle with myself. Battle with DS.

And I opened that letter and it reminded me.

Not only am I not alone, but I am not allowed a pity party.

Zack’s parents, his family, our friends, even strangers are all working together. None of us know where he’ll be or what he’ll be doing in six months or six years or when he’s 26. I scare myself thinking about all the uncertainties.

But, like we said at the parent-teacher conference, we are all Team Zack.

Whatever it takes, we do. Whatever is recommended, we try.

Leave no stone unturned.

The thing is, even if he doesn’t go to college or marry a sweet partner, he will be happy, of that I’m sure.

And even if we never get a dance at his wedding, it’s alright, because he comes up to me several times a day, bows at his waist with a giant smile, holds out his arm and asks me to dance. I can never refuse.

And let me tell you, he’s got some great moves.

 

We partied like it was… 2012?

We had ourselves a lil birthday shindig the other day.

In honor of a lovely two-year-old and her and her family’s journey.

There was (eventually) sunshine, friends and family fluttering about the living room and yard. Lots of catching up, some new friends and a happy momma with a very full and happy heart.

Thank you to those who traveled hours to be a part of our celebration; thanks to those who gave our lucky little girl some new clothes and toys and books; and a thank you to those who sacrificed things they should have been doing or wanted to be doing to be a part of our girl’s day.

 

I still can’t believe she is two.

Two going on 16.

 

Addie, you are loved!

 

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