At the end of 2016, I came across Wendy Zook, she is a photographer in New York! I saw that her son has Down Syndrome, so I took the leap and emailed her asking if she would share her family's journey. She loved the idea and jumped on it!
Our home in the late summer and early fall months of 2010 was one of fear, worry and grief. We hadn’t lost anyone or anything – just a perfect vision of a way of life that was not meant to be ours.
Our world now, in the winter of 2017, is a place of love and joy; a place of dance parties and belly laughs; these are days of sweet “I love you” mumbles and tight squeezes from a handsome six-year-old with big blue eyes and one extra chromosome. Our life is amazing.
My pregnancy with Zack was relatively easy and exciting. I had always wanted to be a Mom and my husband was so excited to have a little boy to play catch with and watch football with on Sunday afternoons. We were young and in love and still took everything in life for granted. On August 7, 2010, Zachary Chad was born after three days of labor and an emergency c-section. We thought we had made it through the tricky part and were allowed to get back to our plans for our dream life as a family.
And then, when Zack was just a few days old, two sleep-deprived parents just weeks away from their first wedding anniversary were faced with a doctor who wrung his hands with nervousness and looked at our son with sadness as he said the words “Down syndrome.” The sunshine outside our hospital window disappeared in a black cloud that hung over us for months. We next faced a world of doctors’ appointments and medical concerns and overwhelming jargon.
I sat with my nine-day-old baby boy on a Monday morning when Scott returned back to work. I held him and studied him. The specks in his eye that to me were beautiful but to medical professional meant there was something different about him. I leafed through a pile of cards that no longer said “Congratulations” from friends but instead were filled with sympathy notes from strangers – People who were afraid of what they didn’t know and who hadn’t been educated on the world of potential and possibility out there for children like Zack. My husband’s grandmother asked what the treatment and cure for DS was. I isolated myself from most of my loved ones. I sobbed warm tears on the phone with my dad. Teardrops landed on the cheeks of this handsome little boy I loved so much.
And in those eight hours on that Monday morning, I reached a fork in the road. Our family could go on a journey that swept us up in waves of fear and worry. Or we could (and did) choose a path of belief, faith, love and joy. I researched as much as I could – the good, the bad and the ugly. I book marked the National Down Syndrome Society’s webpage (www.ndss.org) and returned there for help and resources a hundred times in those first few months. A mass e-mail was sent to all of our loved ones that told them the facts they needed to know and the positive course we wanted to take for our son.
There’s a poem (http://www.our-kids.org/Archives/Holland.html) by Emily Perl Kingsley that compares having a child with special needs to preparing for a fabulous trip to Italy only to have the plane land in Holland.
“ It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.”
Milestones came slow. Agonizingly slow. Therapies through Early Intervention gave us invaluable tools and insight. Local support groups along the way gave us a sense of community and a bit of company. Bit by bit, the grief cloud let loose. The sun peeked through. And it landed on memories. Adventures.
We’ve done everything our friends do with their kiddos, just at a different time or with some minor tweaks. We’ve enjoyed walks with a newborn in a stroller, peek-a-boo to tiny giggles, tummy time, baby food messes and exploding diapers. We’ve seen heart-melting first steps and heard those sweet, sweet first words from tiny lips.
When Zack was 22 months old, we welcomed his little sister Addison Caroline into our family. She was healthy and bubbly and has always been such a light in our family.
You should see the two of them together. It’s an amazing friendship. She “gets” it without yet understanding it all. She is patient with him and takes on an older sibling role a lot of times, helping him get shirts over his head and praising him when his potty training goes well. She accepts drooly kisses from him even when she doesn’t really want them. They play such fun games – running with flashlights pointed at the ceilings and calling each other made-up names. They beg us for a “sleepover” together every weekend. And if Addie is not feeling well, Zack is by her side, rubbing her hair and telling her “It’s OK.” There is nothing but equality and love when the two of them are together.
I worry, still. Sometimes, too much. But now, my worries have more to do with how both children will handle and accept the inevitable awkward, inappropriate or bullying moment as they get older and milestones they won’t realize they’re missing out on. We don’t go to a lot of public places because of Zack’s sensory issues and elopement tendencies. Instead, we create a lot of adventures at home and with family.
One day, I’ll have to say the words “Down syndrome” to Addie. She’s very smart and aware and I’m sure the questions will start soon. My goals for that conversation include honesty and holding back tears.
As a wedding photographer, I run across my greatest personal sadness about four minutes each wedding that I work – the mother-son dance. It’s a silly tradition that I know we more than make up for with twirls and spins on our kitchen floor to “Chicken Fried” on repeat. But, it is for me, that glaring reminder of something that likely never will be.
One day, not long after Zack’s diagnosis, my husband just about fell apart. And I realized it was his realization of those sports plans and dreams with his first-born son perhaps not coming to fruition. And so, each time the two of them are throwing a baseball back and forth in the yard or they’re snuggled up on the couch cheering for the Eagles on a cozy Sunday afternoon, I smile to myself. Because we are getting exactly what we always dreamed of, just in our own unique twist.
Zack has taught me patience, acceptance, faith and a little bit of fight.
You know what Addie has taught me? The exact same things, perhaps just to a higher degree.
In December 2015, my personal and professional lives merged in a most inspiring moment. I was given the opportunity to be a part of a photo shoot with the National Down Syndrome Society. Those same people that unknowingly brought me peace and comfort in the early days of our diagnosis were now working with me in an event that included more than 50 models ranging in age from 11 weeks to 50-plus years. I talked with college graduates, aspiring actors and musicians, hard-working community members and happy people with significant others – all rocking an extra chromosome. I hugged parents who had walked this path before me and then squeezed a few new ones who were just beginning their journey. It was humbling and eye-opening and seemed to bring things very full-circle. A handful of those photos even made it to the big screen in Times Square in New York City.
The one moment from that experience that sticks out the most to me was when our little Buddy Holly model, Ben, was feeling a bit camera shy. His mom and older sisters immediately wrapped around him, donned props and hats and sang and danced with him until the nerves wore off and another photographer could capture some amazing shots. I just remember standing in our makeshift studio doorway, with the happiest of tears running down my face, smiling at the way they had embraced their life and the vivacity with which they lived that moment.
When I previously worked at a high-end resort in Pennsylvania, I was outside near our front entrance with my team one day when I noticed a woman, perhaps in her mid-40s, with a teenage-aged son who appeared to have some of the physical features I’ve come to recognize in individuals with Down syndrome. I was angry with myself because my first reaction was sadness. I was looking at my future, I thought.
And then I looked closer. He held her hand tightly and they both wore large grins as she talked to him. I was looking at my future, I thought. And it looks like I’m very blessed.
If you or someone you know someone who has a loved one with Down syndrome, keep in mind these things:
- They do not need sympathy, pity or sadness. Be a source of positivity and happiness.
- Use people-first language. “Boy with Down syndrome” – NOT “Down’s child”
- Please eliminate the “R” word. It’s got horrible connotations and many of them are rooted in mocking people with disabilities.
- Educate yourself and those you love. I love following NDSS for facts and figures and blogs like Kelle Hampton’s and Nothing Down About It for a good pick-me-up. Watch the year of the articles or books you read – a lot of advancements have been made in the last five and 10 years.
- Find out what you/they deserve. Disability rights are getting better and better, but it’s not always clear what’s obligated. Find out and make sure your schools, doctors, therapists, etc, know what’s right, too.
- Allow yourself / them bad days. Sometimes, for no reason, I get pretty down thinking about the uncertainty of DS. I allow myself that – only now and then and only in moderation. Things like IEP meetings and any issues you may be fighting can cause anger or depression.
- Make sure caregivers are taking care of themselves and being taken care of, too.
Wendy couldn't have said any of this better!! No matter the situation you are going to have your bumps in the road, but you have to see the UP side of things!
Thank you SO much Wendy for sharing such an incredible story!
