One of the great things about having a larger social media community is that people send you things they think you’ll like. It’s like having your own little army of personal shoppers, and there are numerous items in our home that were found simply because a sweet reader took the time to send me a link with “These rainbow tennis shoes have your name all over them!”
Because we have a child with Down syndrome, people also send articles and stories and news clips that pertain to special needs, and I love it. I feel informed and continually inspired by the constant stream of new stories people send my way about the great things people with Down syndrome are accomplishing, the breakthroughs in research that are being made to improve their lives and the new products, opportunities and advocacy that is happening within the special needs world. I’ve learned so much thanks to the links people send me, and if a story or product doesn’t resonate with me, it’s not a big deal–we move along.
Shortly after Nella was born, I wrote about the rite of passage all special needs families go through after delivering their babies–being e-mailed the Road to Holland poem 923,402 times by well meaning friends who don’t know how else to help (if you sent it to me, good for you–it’s a beautiful poem). I wrote how I felt about the poem which, at the time considering I was Stage 1 in acceptance, was “Don’t tell me I’m stuck in Holland–I’ll find a way to get to $#@*ing Italy with my daughter on my back, thank you very much.” I’ve softened since and, while I still firmly believe that having a child with special needs metaphorically makes you a dual citizen of both Holland and Italy and that you are not limited to just one, I recognize the intent of the poem and so appreciate the number of resources out there for families dealing with special needs in different ways. I’ve never been one to buy a chromosome slogan t-shirt, but we all take our corner in the advocacy ring, and we need all the bases covered. If wearing a t-shirt about Down syndrome is fitting for you, get on that base! I guess what I’m trying to say is that I’ve realized that just because I’m not into something doesn’t mean I have to be against it, and that we can change our minds about things whenever we want to. Which brings me to dolls with Down syndrome.
The first time someone sent me a link to a doll with Down syndrome, I clicked on it and frankly felt angry. It didn’t highlight the sweet facial characteristics we loved about Nella; it exaggerated them, making the doll an easy target for jokes. It was sold with the persuasion that your child with Down syndrome deserved a doll that looked just like her, but I thought all the sweet baby dolls in Nella’s room–the same ones Lainey played with–did look just like her. I found the suggestion that she needed a special doll, different from the ones her friends were playing with, offensive and exclusive; and I made a firm stance within that we do not believe in dolls with Down syndrome. I even turned down a generous sponsor opportunity with a large doll company releasing a doll with Down syndrome for Down Syndrome Awareness month, explaining to my media agent that the product was not a good fit for our family. When she e-mailed me back personally, commending me for turning the opportunity down if it didn’t feel right, she shared that she had a friend with a child with Down syndrome and would love to know more why it didn’t fit. I explained to her that the foundation of our special needs beliefs and advocacy was “more alike than different” and that marketing a different doll for kids with Down syndrome felt isolating and contrary to that.
Perhaps it’s the fact that we’re now almost nine years into this, and I don’t bristle as much at things (except, of course, things that we are required to bristle at–intolerance, injustice). Perhaps it’s the fact that we’ve had some years for doll manufacturers to perfect their art, thank the Lord. Or maybe it’s that as Nella grows, there are more obvious differences than there were when she was a chunky little cherub on my hip. As she recognizes those differences herself, I want to make sure we are celebrating them in a way that makes her so very proud to be exactly who she is. We can choose BOTH forms of advocacy: Down syndrome is just one little thing that makes Nella unique so we celebrate all the other ways she is like her peers AND Down syndrome is just one little thing that makes Nella unique so we celebrate the hell out of this amazing thing that makes her so very special.
So when an online friend, two weeks before Christmas, sent me a message that said “Did you see these?” with a link to a children’s shop in Australia, I clicked on it to find a video with the caption, “Look at these beautiful dolls with Down syndrome–we’re adding them to our shop tomorrow!”…and I fell in love.
I fell in love with the dolls that subtly capture in the most beautiful way those special little features we love. And I fell in love with the shop and the way they curated their products and the thoughtful way the dolls were being sold–wedged in between all the other beautiful dolls that had dark hair and blond hair and brown skin and white skin and Asian eyes and almond eyes–all photographed and categorized in this beautiful collection of dolls that celebrated all kinds of differences, no big deal. For the first time, I wanted a doll with Down syndrome for Nella, and I wanted it bad–so bad, I woke up early to make sure I could put one in my cart before they were sold out. I wanted to give it to her and tell her it was a special doll–a doll that had Down syndrome just like her so she could add it to her collection of all the other dolls that are just like her but know that this one shared something extra.
On Christmas morning, Nella was presented her doll as our family surrounded her, all beaming and telling her that the doll had Down syndrome–“just like you, Nella! Just like you! Isn’t she beautiful?” You should have seen her smile. She immediately took the doll, gently placed it over her shoulder and patted her back.
She carried that doll around all day, telling Lainey multiple times, “She has Down syndrome, Lainey. Just like me.” It was one small thing we could do to help her feel what we hope she is surrounded with her entire life–the message that people with Down syndrome are beautiful, capable and loved. And I knew she felt it holding that doll.
If you haven’t seen this video of the little girl with a prosthetic leg who finally received a doll made to look just like her, watch it. It’s a perfect example of what a powerful message of acceptance a doll can bring.
The doll company that makes our doll is Belonil, a company in Spain, but we purchased it from The Small Folk, the only company I could find that would ship the doll internationally.
I feel strongly about a lot of things both when it comes to raising a child with special needs and raising a child in general. But I’m learning to add the phrase “right now” to those feelings–“I feel strongly about this right now.” It helps me abstain from judging other opinions, allows me to recognize my strong feelings might be associated with current circumstances and/or pain and keeps the door open for change.
Oh, and the doll’s name? We all anticipated what Nella would name her being that she’s known for her creative Barbie names. I mean, we’ve got Pee Box, Paquel, Poop and Grocery Store sitting in the Barbie car right now.
But be still our hearts when we asked her what she wanted to name her doll and with no hesitation, she proudly answered “Nella.”