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.
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.
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.