Dear Jo Jo,
This past Friday was a very big day. It was your birthday.
I woke up at 6:30 in the morning to a familiar sound: you singing. I can’t always make out the lyrics, but I usually lie in bed listening to you for a few moments, savoring your voice, until I drag myself out of bed to start my day. But this morning was a bit different. I heard the sound of footsteps and giggling and then I heard two little voices screaming at the top of their lungs, “Happy birthday, Jo Jo!”
When I came into your room, you were sitting on your bed like the Queen of Sheba, Teddy and Geoffrey embracing you on either side and Ivry standing in front of you wagging her entire body back and forth like a giant swaying sausage on four legs.
It was an heartwarming picture, but it only lasted for a minute. Geoffrey decided he wanted to sing you happy birthday in Hebrew. Teddy disagreed. They started arguing, someone pushed someone else off the bed, and then someone trampled on poor Ivry’s paw. But there you were, in the midst of all the screeching and barking, determinedly belting out “Happy birthday dear Jo Jo.”
Why not? It was, my darling, your moment.
I’ve been thinking a lot about your actual birthday recently. There was a big kerfuffle on social media about a month ago, when an Armenian mom allegedly abandoned her baby with Down Syndrome. One of my editors asked me to write an open letter to her. I did, here: http://www.womansday.com/sex-relationships/family/ruzan-badalyan-open-letter. Writing it was hard. I don’t often like to think about those first few days when you were born, although I have to say, I remember them as vividly as if they just happened a week ago. I don’t like thinking about that time, it was so scary and I was so afraid, not just because of your diagnosis but because I was so terrified I’d never truly able to love you and feel bonded with you.
Well, that all happened, of course. It took time, but we got there. I try to be as open about it as possible, because I want other moms to know they’re not alone in what they’re feeling. Post partum depression happens to about 12 percent of new moms, after all. And while I got some nasty comments, I was heartened by the women who came out of the woodwork to email me letting me know they’d had the exact same experience.
But I also heard from other women, moms who live in other parts of the world that aren’t as progressive as the United States, moms who are struggling with the shame and stigma of giving birth to a baby with Down Syndrome. They live in countries that don’t have the resources and support that you and I both had to get us through the first few years. One mom told me she hasn’t gotten one baby present for her daughter, who’s six weeks old, which broke my heart. As hard as those first few weeks after your birth were, I remember all the designer clothing and monogrammed diaper bags and personalized baby books that arrived. Someone sent a fur lined sleeper that was the talk of the Columbia NICU. You were five days old and already achieving your fashionista status!
When I took you home from the hospital at 2 ½ weeks old, you had appointments already lined up with some of the top geneticists and feeding specialists in the area. You were registered for Early Intervention. I had info for Down Syndrome support groups, general new mommy support groups, and just about every baby centered music and gym class you could imagine.
I can’t imagine what I would have done if your grandparents, instead of insisting on coming to see their new granddaughter immediately, insisted I put you in an institution. I remember getting annoyed at Nana for shoving swim suit catalogues in front of my face when you were only 3 weeks old. She wanted to know if I thought your scar from intestinal surgery would have faded enough by summer that you could wear a bikini. A bikini? For a newborn? A newborn with Down Syndrome? I thought Nana had completely gone off her rocker. But you see, in Nana’s mind you weren’t just a baby with Down Syndrome. You were her first grandchild, after all, and what Jewish grandmother in her right mind wouldn’t insist her beloved granddaughter wow the beach in a Ralph Lauren bikini?
So now, looking back at your birth, and all the wonderful things that have happened since then, I can say that on your birthday I’m grateful for how far we’ve come as a society in terms of accepting children with disabilities. Grateful for the fact that tonight, in the midst of an unexpected snow storm, eleven other little girls from your class showed up to celebrate your birthday with you. Grateful that you have friends like Lily and Madison and Abby and Leila who see you as an equal and push you to do things that you sometimes are hesitant about, like reading and dancing and playing hopscotch.
Grateful for the fact that you performed in a performance of the Nutcracker this past December with the New England Ballet troupe and other kids with disabilities. Grateful for your special ed teacher at school, who spent two days observing you on the potty and “collecting data” so she could figure out how to get you to go on your own without any extra assistance. (I thought she was joking when she told me but she wasn’t—she mapped out 20 steps you’d need to master to go potty by yourself. Who knew?). Grateful that you go to Sunday school at a synagogue that automatically assumes you’ll be having a bat mitvah and that part of their job is to make sure you get there.
As hard as this road is sometimes, and as hard as I’ve had to advocate for you, I can’t imagine what it would be like if parents hadn’t started fighting this fight a half century earlier.
I’m thankful that you’re growing up in a time where your role models can be amazing women with role with Down Syndrome such as actresses Lauren Potter or Jamie Brewer or long distance swimmer Karen Gaffney. It’s no longer a question of if you’ll go to college, it’s where you’ll go. It’s no longer a question of if you’ll live to adulthood, but what you’ll do with your life when you get there.
That doesn’t mean there’s not a dark side. There are still cases like Ethan Saylor’s http://www.cnn.com/2013/08/29/opinion/perry-down-syndrome-death/ that highlight the social injustice people with disabilities still face. I worry about the fact that you have 20 times the risk of developing leukemia as a typical child, or the fact that you have a one in four chance of showing signs of Alzheimer’s in your 40s.
But part of learning how to be your mother has been my learning how to accept what I can and cannot change. I can’t increase your IQ by 50 points or assure you’ll live a long life and make sure you can live independently. I can just do everything in my power to make sure I’m giving you the tools to make sure you’re the best Jo Jo that you can be.
It’s 2015. The world is your oyster, my darling. Embrace it.