Everyone wears a hat in life. No matter your age, race, socioeconomic status, or place you live.
Some people wear their hat with pride, some wish their hat was invisible, and some of us wear hat that seems more like a sombrero and everyone can see it.
There are times we have the opportunity to choose the hat we want to wear. Then, there are some that the hat is just given, and we have to wear it whether we want to or not.
24 years ago, my husband was on vacation and had instant pull toward a young man with Down syndrome. He said he was just drawn to him, wanting to get to know him and then a piece of his heart was carved out for anyone he saw with Down syndrome.
23 years ago, I had a best friend and she was different. Honestly, I didn’t know what made her different, but I liked her. We had fun together, we played jokes on her mom, and rode in the back of a station wagon to church almost every Wednesday. Later, I saw her in high school and she told me she had autism. Looking back, it made a little sense, but why did that matter? We were kids, just the same.
Ten years ago, I worked at a summer camp. One week we had a camper that was differently abled, didn’t speak verbally, used sign language, but the expressions on her face could tell us everything. My initial reaction to her wasn’t great, because I was scared I would do something wrong. But that teenager turned my world upside down in one week and her smile will be part of my heart forever.
Eight years ago, I started a new job. Titled as a behavioral therapist with children on the autism spectrum. A place and time I grew friendships with these kiddos, their families, and began a stirring in my heart for people with different abilities. Often times I would be driving home, wondering how their families did it.
Those families became more than work, we were doing this work together. We cried together, we fought together, we talked for hours on the phone on how to best prepare their children for the next thing.
Five years ago, I was working in a church for a short time. My husband would always get wrangled in to help, but each time his first question was asking if he could go hang out with his good friend with Down syndrome. The joy that was brought through that friendship was just so fun.
Two years ago, my husband and I were talking about adoption again. We just traveled down the domestic route, that never settled into peace. We fought, we invested, and we prayed, but it wasn’t in our cards. Our conversations had begun to turn to China. This wasn’t a new conversation for us, because it had always been on our hearts, but we hadn’t been 30, until now. Things had changed in China, the wait list for a “healthy child” was never ending.
Our agency had sent over a list of waiting children, the list of kids that most people didn’t want. They were older, or had a significant “special need”. The beauty of a list like that, is we as parents get a chance to decide if a special need is significant for our family. We got to google, research, talk, reach out to friends and make the choice.
There was little girl, 2.5 years old, across the ocean with Down syndrome. Her smile captured us immediately. But then the questions. The unknown is a hard place to live in, the anticipation is something very hard to describe. We talked about it all, or at least we thought so. The conversations of, are we going to be okay if she lives with us forever? what if she never talks? what will happen when we pass?
The questions that almost all effected us, not her.
My thought on this now is that I knew I could advocate for her, do anything I could to help her thrive and grow. The lingering question was always, would it be enough? And then we got our infamous email.
One year ago, we flew across the world to become a family of four. In China, she truly didn’t like us. Why would she? We had just taken her away from everything she had ever known, her caregivers, her friends, her language, her food, her comfort.
When we visited the orphanage, I sat on those marble floors sobbing. It had been two days, and it was the hardest two days of my life. My thoughts ran, and I wondered if she would be better off in China without us. My husband and I seriously talked, and we came to the conclusion that even though it was hard, it would be worth it for her. We knew what life would be like without us taking on the hard days, and maybe even years.
Somehow, crouched in that tiny little fetal position, we saw past the hard and saw hope.
We flew home, with a tiny bit more love in our hearts for this precious soul. When we landed, I put on a sombrero, it was labeled Special Needs Mom. It wobbled back and forth, front to back. It was a hat I couldn’t take off.
Everyone knew, we chose a child who was differently abled, and I had to accept this and put on the happy face. I didn’t think there was a space for me to share the hard moments, or the grieving moments. I was wrong, but I knew my head needed to be down, my phone always on, checking my email, and creating learning experiences for her, always. She needed to catch up, she needed all the therapy with me by her side so she still bonded.
The hats I wore before of mom, wife, friend, daughter had been replaced. I wanted my sombrero to be invisible, I wanted Violet’s hat of Down syndrome to be invisible. The wishing of hat exchange was high on my priority list.
In this last year, we have seen how all those years before, all the hats we wore were preparing us for this journey. We learned how to see past Down syndrome advocating role, and be a parent to a little girl. A little girl who is breaking barriers we never dreamed of, her differently abled learning doesn’t define her, it’s not who she is.
She isn’t Down syndrome. She has Down syndrome. Yes. Will it effect things in her life? Yes. But she won’t be defined by it. I will do anything to help with that in any capacity.
She is trying to talk more and more everyday. She climbs on the playground, she runs with her sister, she swims with her cousins, she loves to be tickled, getting scared is a favorite, she loves animals, music is her jam. She is a kid, like all the other kids surrounding her.
How in the world did I come to seeing past the Down syndrome, grieving it at times, and truly accepting it? People. Plain and simple, I started becoming involved with our local Gigi’s Playhouse. The moms meet once a month, we celebrate what our kids overcame during that month, we talk about what they dumped, threw in the toilet, or drew on. We laugh, we cry, we encourage each other. There is a special group page for the local moms, I am part of other groups to ask the adoption questions, and I follow other families on social media to feel inspired and encouraged.
This world we live in, the Down syndrome community is so special. We raise money together for adults to pursue higher education, we invite and gather our friends and family to do it with us. Finding and creating Team Violet. That includes doctors (near and far), speech, occupational, and behavioral therapists, teachers, and other advocates. Because, if we did it alone, we would all be lost. Creating community for our kids, is as important as creating community for ourselves.
My hats now, aren’t interchangeable. They are all one, because that’s who I am. A wife, mom, friend, an advocate. Maybe it’s a big hat still, but I’m learning to balance it. Not a special needs mom, not the mom, wife, or friend I used to be, because that can’t define me either.
Words, labels, titles don’t define us, but they can help form us into being the best we can be.