Why Everyone Needs to See This Photo of My Daughter Right Now

Photo of Jo Jo's class by Jeanne Baranosky

Photos of my daughter, Jo Jo, fill her school yearbook. Smiling at the camera in her class photo. Triumphantly holding a ball on the basketball court next to all her friends. Sitting cross-legged on the playground with all her classmates for field day. But there's one that reaches out to me, tugs at my heartstrings, and makes me weep. 


In this one, she's standing full and center in the picture, surrounded by all the other little girls in her class. Her eyes are wide, beaming, her blond hair fluffed out in a golden haze around her face. She looks radiant, a beautiful gamine resplendent in her Betsey Johnson leggings and Ugg boots.

If someone had shown me this image the day she was born, when I learned she had Down syndrome, my tears of despair would have turned into tears of gratitude. Because there, in the photo, is the daughter I'd dreamed about throughout my pregnancy: Johanna, my strong, fearless, self-confident warrior, exactly as I'd imagined.

Yet today, I look at this photo, and it breaks my heart.

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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 today, in the current political climate, it's so horribly different. Right now, on Capitol Hill, a group of senators are furiously engaging in backroom negotiations about the Better Care Reconciliation Act, a health care bill that will seriously impact her future. While Congress squabbles about whether the bill will still contain a tax for high earners, or subsidies for those with low incomes, and whether certain states have enough money to combat the opioid epidemic, there's one area where they are mostly silent. It concerns the over $880 billion of Medicaid cuts that will be enacted over the next decade if the bill goes through. 

And this dismantling of Medicaid means the dismantling of my little girl's future. Medicaid 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. 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, who graduate from high school at 21 and find that there's nothing available to them. In my home state of Connecticut, for example, our governor is cutting adult programming right and left. I'd always assumed that when my two sons went off to college, Jo Jo and I would pick up and move to whatever part of the country currently offered the best services for disabled adults. But now it seems like a cruel joke. The cuts will be felt everywhere, and they will be brutal. 

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I've been fighting as hard as I can, as much as I can. But it's difficult 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 (Individuals with Disabilities Education Act). There's Neil 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 that will give the uber-wealthy a tax break on the backs of our children.

When I was pregnant with Jo Jo, I often woke up feeling like I couldn't breathe, which, in hindsight, seemed to be my body's way of warning me of what was to come. That sensation persisted for the first couple weeks after her birth, when I would start upright in bed, 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 a.m., wondering, Why? Why? Why?  

Jo Jo has such potential. Yes, her cognitive development has been slow, but she's inching her way forward with baby steps. 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 9-year old girl basking in the glow of her first crush. I look at her, every night now, proudly showing 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.

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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 my having to say another word, "Medicaid. I'm so sorry." 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. If that doesn't happen, her dad and I will do everything we possibly can to make sure she gets everything she needs, but given the fact that the average cost of providing care for an adult with disabilities is about $63,000 a year (living at home with some sort of day program), we won't be able to sustain it for long. And after we're gone, her two adoring brothers (now ages 8 and 6) will need to look after her. They won't be able to do it alone, either. They'll need government support, especially since they will probably have their own families to provide for.  

The one thing I take comfort in is the knowledge that Jo Jo can fight for herself. Last week, when I picked her up from her sports camp, 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 discussing how much she'd matured over the last year and how far she's come. My daughter, my little blond warrior girl, determinedly ascended that wall with everything she had, low muscle tone be damned. 

Above all else, Jo Jo is a survivor. And I know she'll advocate for herself in a way no one else -- even her mother or brothers -- can or will. 

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