Battles, Barf and Busy

If you’ve made it past the title, congratulations, you’re a true friend, haha!

But it’s the three “B” words that best describe my past few days.

We’ll start with the least appetizing.

Both kids woke up with a little bug this morning. A morning that I had intentionally started peacefull, slowly, calmly (because I felt the other two words creeping in like a heavy fog). A morning that began with pep talks and a few extra minutes to myself. I even put on mascara. And I brushed my hair! I began to feel like a human again. I found my Pinterest board with quotes and images I’ve collected over the years that fall under the title of “Smile.” I published a photography blog post and reminisced about the couple and their wedding day. I even patted myself on the back from my improvement in photography over this past year.

And then the screaming. And that sound you hear as a mom that lets you know all bets are off and all plans are out the window. The sound that signifies loads of wash and Lysol sprayed on every crevice in the house.

How cruel and torturous that when I finally pick myself up and get myself moving in the right direction, the, er, puke hits the fan. Or at least the floor.

But let’s back up.

I’ve been busy. We’ve all been busy. We’ve moved, begun looking into schools and therapies for Zack and learned our way around a new city and series of suburbs. I’ve photographed four weddings, five engagements, three family sessions and one senior session. I’m designing albums and ordering prints and creating blog posts and all the other evil necessities to restart a business. I’m teaching numbers and colors and manners and breaking up fights and tackles.

And that’s OK.

Because I learned long ago to make sure your “work busy” never interfered too much with other busy things.

Like being busy with quick notes, surprise packages, little texts and surprise phone calls and FaceTimes. Even if I neglect a load of laundry. Or take three days instead of two to deliver a gallery.

I’m grateful for my other creative friends who let me be a part of their busy. And the family that answers my random texts about house decorating or Halloween craft ideas.

Because mommyhood can be a lonely, isolating job. One that’s busy and in-your-face and deprives you of so much ‘You’ Time and privacy that you feel foolish for ever thinking you were busy before. It forces you to be selfless and work tirelessly. To receive no concrete reward, other than the survival of a hard day and the belief that you’re doing alright.

Let’s face it, womanhood is a crazy job. There are some days I just want to scream, then bawl, then eat an entire bag of M&Ms and then drink tons of water and do an hour of Pilates.

So I really could have lost my mind when the pukey situation came to the forefront. I almost did, too, but a couple of things happened.

Firstly, Scott came home. Just for an hour and just for moral support more than anything else. But I heard the doorknob turn10 minutes after texting him my dilemma in taking care of two ill kids on two opposite ends of the house while avoiding our crippled dog that needed to pee and the dirty wash I just kept throwing into the hallway. The cat wanted fed and I hadn’t even started the Keurig machine. But then that doorknob turned and simply having him in the house for that hour told me he understood the difficulty of my job, too, and that his work was far from being more important than his family.

And not too long after that, I leaned my head on the just-completed washing machine and texted one of my new friends.

She keeps me in line and humble and reminds me that faith can be a pillar of support, too.

“Somehow the Lord has a plan, my friend,” she said. “Even if vomit is involved, LOL.”

I laughed, changed the laundry, kissed my hubby and sent him on his way. And then I put down the phone for a while, closed up the laptop, and just snuggled. Massive cuddles. I braided hair, held hands, watched more cartoons than I’ve seen in six months and just… just was.

I realized not too long ago, sitting on our couch with two little whiny kiddos in each arm, that I forgot the most important B-word:


I can face battles, clean barf and overcome the epidemic of busy.

And I can welcome the blessed feeling. The knowledge that I am lucky and fortunate and loved.

And I can make those around me feel that way, too.

Starting with the two little snugglebugs.

So, go adventure — in a car or in your home. Alone or surrounded by the most annoying people in the world you have to call family. Life is a grand adventure. Sometimes, within yourself. My journey continues.

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?


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.


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.