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.




Rewind and unwind

A friend recently asked me what my “word” of the moment was — am I feeling “grateful” or “blessed” or “rejuvenated” or “reflective” or the many other phrases that tend to get thrown out around this time of year?

Well, yes, definitely. But.

I think my word is

S U P P O R T E D.


We have had to make some gutsy, difficult changes and decisions this year — from a giant one like moving to a new home in a new town in a new state with nearly no loved ones nearby — to a small but powerful one like saying no to traveling and chaos and squeezing in too many visits with too little time for the holidays. Instead, we’re staying tucked in tight as a family of four to enjoy the first bit of quiet “us” time that we’ve managed since the move. To start some new traditions and just… unwind. And yet, we are supported. Cousins and aunts and uncles “get” it — they know that in a perfect world, we’d most definitely be around their tables and laughing with them, showering the kiddos with chickey kisses and cousin squeezes and a roomful of love. And those same families understood our reasons for our relocation. So many have visited us already and each time there is a knock on that front door, I feel all of that gratitude and blessings. And support.

I’ve had to make some semi-selfish moves individually for my photography business, too. My biggest supporter has been my hubby Scott. He has never once asked me to stop or slow down or reconsider. He hasn’t questioned new lenses or workshops. He has given his support in many ways. Weeks with 60 hours of work have sometimes led to an entire day alone with the kiddos as I photograph a wedding all Saturday and then am a half-zombie uploading previews on a Sunday. Every new wedding booked is met with excitement and patience as I spew details about venues and styles and how they met.


Recently, a fantastic opportunity presented itself that merged both my photography and my personal life. I was asked to participate in a photo shoot in New York City with the National Down Syndrome Society featuring more than 50 models of all ages with Down Syndrome. Each model received pampering from our hair and makeup volunteers and got decked out in costumes to look and feel the part of some of the most iconic rockstars. I (along with two other photographers) met my new friends and captured some dance moves, rockstar attitudes and sweet smiles on a cobblestone street in NYC. And as much fun as that was, the best part was talking with their parents and siblings, hearing about their accomplishments, receiving secrets about their dreams and goals. And the BEST hugs and handshakes and laughs imaginable.

Back to support.

No one ever questioned me when I made an impulsive decision to just do this crazy thing — leave home for two days, fly to New York City, edit, share and digest the whole experience. Scott knew I had to do this and he was really, really proud. And my aunt came to watch the kids for us while Scott was at work. It was not an easy time for either of them but they held down the fort so I could scratch something off of my bucket list five hours away.

It was not an easy couple of days. I met families who have had really difficult health issues that we’ve been fortunate enough to avoid so far with Zack. I heard stories from moms who have had to fight for equal treatment, equal education, rights and opportunities.

And I saw a lot of dance parties. I saw siblings completely smitten with their brother or sister, moms who could not have been more proud, teens and adults in college or living on their own.

I’ll be returning to NYC in March to see the NDSS’s annual auction and gala event which will showcase our final images from the photo shoot in large posters at BB Kings’ House of Blues. And to reunite with some of my new friends.

I’m still wrapping my head around the experience.


So, with the completion of the NDSS shoot, my photography is all wrapped up for a couple of months. (I’ve even started scheduling some social media posts well in advance so that I can truly take a step back and enjoy some family and me time). I am so excited for the weddings I have on the books already for 2016 and 2017 and all of the couples and families I’m getting to know.

And I’m really relived to finally be able to unwind.

We’re ready for our quiet family Christmas. The kids are not receiving a lot of presents from us (our extended family *might* have gone overboard with the material items!) and are aware of things like “being a good friend” and “baby Jesus’s birthday” and little snippets like “Christmas magic” and “the star that showed them where to go.” All of those things seem much more important than what’s under any wrapping paper, so our holiday has already gotten off to a great start.

We’ve started traditions of watching holiday movies and reading books together more often. We baked two batches of cookies this week. We’re looking for our Elf, Louie, every morning (he might have been hugging a wine bottle today, haha!).

I have some hot cocoa cooling down in the kitchen so we can sing the Polar Express “Hot Chocolate” song together and enjoy a little treat. (Even though, you’re never, ever supposed to let it cool).

There is more time to be spontaneous with hide-and-seek requests and sought-after snuggles, too. Life is pretty good. We are supported and we are supporting each other.


Some updates:

Zack is still not in school. We had some mix-ups with paperwork and school district communication. (We’ve since taken care of it while not always using our nice voice and words). He has a tutor that comes to the house every day for an hour for coloring, letters, shapes, etc. We then have two days of evaluations the first week of January. Once that’s complete, we’re just a transition meeting away from finding him a good place to learn and play.

He’s still a lovebug most of the time, although he’s getting too old for Momma’s constant hug and smooch requests. I know not to pull away from a squeeze first. He has had some issues with being a little rough and not knowing his boundaries, but we’re hoping the return of some therapists in the new year will help considerably. His speech has improved quite a bit recently. He’ll do back-and-forth dialogues very well and on a good day, surprises his tutor with the letters, words, numbers and colors he can identify.

Z-Man is currently obsessed with PopEye (“Spinach”) and does the best impression of the old sailor. He also loves Buzz Lightyear, reading, playing imagination games with little toys and eating.


Addie is still our ornery, dramatic, princess-loving little girl. Her favorite color is still purple and we seem to be over the phase where ALL she would wear were skirts. She loves dancing and singing made-up songs (very loudly). She says “for” instead of “or.” “Do you want red for blue?” She is still very, very witty, too, and has some pretty funny one-liners and responses.

She has an entire imaginary persona named Square-ta. Who has glitter. And she stores her glitter in a yellow box under her bed. The yellow box has a squeaky lid, and, according to recent Addie reports, “it just keeps getting squeakier every day.” (There is nothing under her bed, FYI).

Last night at a restaurant, the waitress called Addie “sweetie.” Addie stopped coloring, looked up and in a very sassy manner said, “I have a name, you know.” (Zack, meanwhile, started making smoochey faces and waved his hand toward the restaurant exclaiming, “Come here, I want to kiss you.”)


We are about to start our couple of quiet Christmas-y days and we wish you and yours time with family and loved ones, a little bit of relaxation, a lot of love.

(And lots more blog posts in 2016!).


You can view a recap of my NDSS photo shoot experience HERE.

You can learn more about the March gala and other NDSS events HERE.

You can view my photography page and see some of this year’s weddings and engagements HERE.

Our photo shoot was featured on — you can see our story HERE.


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.

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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.

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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 see 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.