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 TheMighty.com — you can see our story HERE.

 

Advertisements

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.