Why This Photo Makes Me Cry
There’s a photo of Jo Jo, in her school yearbook. She’s standing, surrounded by the other little girls in her class. She’s full and center in the picture, eyes wide, beaming, her blonde hair fluffed out in a golden haze around her face. She looks radiant, a beautiful gamine resplendent in her Betsy Johnson leggings and Ugg boots. If someone had shown me this image the night after she was born, as I paced up and down the corridors of the NICU in shock and disbelief, my tears of despair would have turned into tears of gratitude. Because there she was, my daughter, strong, fearless, self-confident, exactly as I’d always imagined.
Today, I look at this photo, and it breaks my heart.
It breaks my heart because a year ago I would have looked at her and seen the possibility, the beauty of inclusion, my gorgeous little girl surrounded by Abby and Leila and Audrey and all of her other BFFs. She’s so natural standing there, totally in her element. She knows she belongs.
But now, in the current political climate, it’s so horribly different. Trump care will most likely be passed, and when it does, all her hope for a future will be gone. The bill contains over $880 billion of Medicaid cuts. Medicaid not only provides some of her school-based therapies, it provides the only means she ever has of living an independent (or semi-independent) life as an adult. It gives her health insurance and job training and day programs so that she can go out and live and work in the community. But if these cuts go through, there will be nothing for her. She, like millions of other disabled Americans, will sit home and quite literally rot.
I’ve heard horror stories already, from parents of young adults with intellectual disabilities. They graduate from high school at 21 and there’s nothing for them. In Connecticut, Malloy is cutting adult programming right and left. I’d always assumed that when the boys were in college Jo Jo and I would pick up and move to whatever part of the country provided the best services for adults, but now it seems like a cruel joke. The cuts will be felt everywhere, and they will be brutal.
I’ve been fighting as hard as I can, as much as I can. But it’s hard not to feel beaten down and defeated given the current administration. There’s Jeff Sessions as Attorney General, who once claimed that special education students “may be the single most irritating problem for teachers throughout America today.” There’s Betsy DeVos, and her blatant ignorance of IDEA, and her charter schools. There’s Neal Gorsuch, whose ruling against a disabled child was so harsh that even the conservatives at the Supreme Court quickly moved to reverse it. And now there’s the health care bill, with the Medicaid cuts which, in the words of one disability rights advocate I respect, “give the uber wealthy a tax break on the backs of our children.”
When I was pregnant with Jo Jo I would wake up often feeling like I couldn’t breathe, which, in hindsight, seemed to be my body’s way of warning me of what would come. That sensation persisted for the first couple weeks after her birth, when I would start upright in bed, literally gasping for air, feeling like I was drowning. As I got used to the reality of having a baby with Down syndrome, and as I learned about support systems and the fact that yes, there were services available to us, that feeling lessened. But now it’s back, and I often once again find myself pacing the house at 3 am, wondering, why? Why? Why? Why?
She has such potential. Some of her cognitive development has been slow, but she’s been inching her way forward with baby steps. But some of the biggest advancements I’ve seen this year have been with her emotional development, her maturity. I watched her a couple weeks ago, at a birthday party for one of her classmates. It was a nighttime party, watching a movie under the stars, and she was so happy to be there, twirling around in her sundress and greeting her classmates. While everyone else ran around tagging each other and screaming, she sat like a little lady in front of the screen, watching Lego Batman. Occasionally I’d stroll by to check up on her and she’d swat me away, embarrassed, which was, truly, an appropriate reaction for her age. There was one little boy in her class who kept coming up to her to check that she was okay, and she looked up at him, beaming. That night she was talking about him and then totally impromptu she said to me, “Jo Jo loves Mark, Mommy. Jo Jo loves Mark.”
So, so typical, a nine-year old girl basking in the glow of her first crush. I look at her, every night now, proudly showing up her newly pink manicured nails to her brothers or babbling about her best friends, and she has no idea. She has no idea that her world as she knows it could be shaken to the core, irretrievably broken. A couple weeks ago I attended a fundraiser for one of my senators, Chris Murphy. I accosted him after the speech, telling him I was worried sick about the health care bill as the mother of a 9-year-old girl with Down syndrome. “Oh,” he said with a stricken look on his face, and then he said, without me having to say another word, “Medicaid.” He’s on Capitol Hill every day. He’s well aware of what we’re dealing with. He gets it.
She’s still so young, of course. The health care bill may not pass, and if it does, by the time she reaches the age where she’ll rely on Medicaid, it may very well be reversed. Even if that doesn’t happen, her dad and I will make sure that she gets everything she needs, for as long as we can. She has two brothers who will look after her when we’re gone.
And Jo Jo—well, Jo Jo can still fight for herself. Yesterday, when I picked her up from the sports special needs camp she’s doing for a couple weeks, the director told me in astonishment that Jo Jo had managed to scale all the way up the rock climbing wall. “Last year, we couldn’t even get her to put the harness on,” she said, and we spent a few moments commiserating on how much she’d matured over the last year and how far she’d come. But I think about my daughter, my little blonde warrior girl, determinedly ascending that wall with everything she had, low muscle tone be damned.
What's keeping me together through all of this is the knowledge that above all else, Jo Jo is a survivor. And I know that when it comes down to it, she’ll advocate for herself in a way no one else—even her mother—can.