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A Daughter's Diagnosis and a Refusal to Give in to Despair

Johnson

The diagnosis stalked us for two years before it stepped into the light one warm March morning.

“Dads, I hate calling it cerebral palsy,” our daughter’s pediatric neurologist told us on the phone, “because it sends parents down a spiral, picturing the most severe cases. But Josephine has a mild form of spastic hemiplegia, a condition under the broader umbrella of CP.”

We knew this was the most likely outcome of the call. Joey had a strong preference to use her left hand as early as six months old, years before children typically develop a hand preference. She didn’t sit up on her own until she was 13 months old, nearly six months after children usually do. She didn’t walk on her own until shortly after her second birthday, a year later than most. Joey is curious about everyone and everything around her. She talks nearly incessantly from the moment she wakes up. Car rides with her are a perpetual recitation of whom she played with in daycare, demands for certain songs, and a chorus of “Hey Papa, what’s that?” But even at nearly three years old, she isn’t a solid walker and she refuses to use her right hand for almost any activity – big or small.

For most of the past two years, we had been in active “wait and see.” She has been in weekly physical therapy and occupational therapy, she went through a bout of ankle braces, and she has seen an array of specialists. But there could be many things accounting for her developmental delays, and a CP diagnosis is not so much a clear “a-ha” resulting from a single test as much as it is a collection of clues neurologists gather to make an informed diagnosis. CP is a form of brain damage caused in-utero or during or immediately following birth. Often it is the result of a fetus having a mini-stroke that leaves behind some brain damage. A diagnosis requires an MRI – which at Joey’s age was a more significant procedure requiring her to undergo general anesthesia. Any resulting diagnosis wouldn’t have changed what we were currently doing – PT, OT, bracing. So for months, we continued our work with her and waited to see any impact of the interventions. 

But as we were approaching her third birthday, Josephine still remained delayed. We decided it was time to get the MRI. If it were CP, having a confirmed diagnosis would help us access the battery of services she would need as she approached school age. The day we walked her into the Children’s Hospital in Chicago, Joey ambled down the hallways talking to every person she saw, asking them their name. Watching strangers melt as they interact with Josephine is a regular part of our role as parents.

A week later and sure enough, her neurologist shared Joey had scarring on the left side of her brain indicating she likely had had a stroke as a fetus. The result is that the muscles on the right side of her body are harder for her to use than those on the left. Joey will need to spend a lifetime working to strengthen and loosen the muscles in her right leg and in her right arm and hand. “She might not be an Olympic figure skater,” her neurologist told us, “but she can live a very full and active life.” Spastic hemiplegia, her form of CP, won’t get worse neurologically as she ages. But she – and we – will have to work diligently to keep those muscles on her right side strong and loose so they don’t stiffen and contract over time.

I don’t know much as a parent, but I do know that from the moment your child comes into your life, the thought of them hurting becomes one of your biggest fears. Over a year ago, when the possibility that Joey might have a lifelong neurological condition first crossed my mind, I sat in the rocking chair on our front porch and cried. WebMD searches and YouTube videos and a lifetime of images of people living with disabilities merged in my mind to form a movie of struggle and ostracization and pain for Joey. I didn’t want life for my little girl to be any harder, any meaner, or any more cruel than it had to be.

And then, in a moment, an echo of my own parents’ concerns for me as a young man rang softly. I came out to my father on a ride to the hardware store one Saturday morning in 2001 when I was 24 years old. My dad told me he loved me but that he was worried for me. He didn’t want me to be limited in my career, to end up alone, or to be harmed. This was the time when discrimination against gay people in the workplace was perfectly legal, and where civil unions, let alone marriages, weren’t even possible. This was shortly after Matthew Shepherd had been brutally murdered. My father’s fear for my struggle and ostracization and pain was palpable.

But what he couldn’t see then – and to be honest, what I couldn’t see then – is that my being gay would lead to the greatest joys in my life. It has served as the foundation for my current career as an LGBTQ+ civil rights leader; work that gives me great meaning and purpose. It has led me to my husband and to the beautiful life we have built together. It has brought me my daughter whom I love with a fierceness and softness I didn’t know possible. These joys are in my life, not in spite of my being gay. They are because of my being gay. But at the time of my coming out, when the future seemed bleak and uncertain, this joy was not visible – to me or my parents.

This is how oppressive systems work – be they homophobia or ableism. They mark the conditions that separate us from the dominant groups in society as struggles. They wrap our differences in shame. They whisper to us that our lives will be mere shadows of the fulfilling life experiences those in the more powerful social groups will build. These are the lies they tell to reinforce their own power.

I have so much to learn to serve as Joey’s best advocate and champion. It will take an incredible amount of curiosity and humility to get up to speed. But what I have learned – what I know now – is to make room for the joy. My husband and I sat on our couch the week before the MRI and over bourbons we began making meaning of what may lie ahead. I shared with him my recognition that decades ago my parents, our parents, sat in a similar place of worry for very different reasons. He nodded. 

So we began bouncing off joyful possibilities. Maybe it is through the network of people living with CP that Joey meets the love of her life. Maybe it is her spastic hemiplegia that inspires her to become an artist or author giving voice to her experience. Maybe it is her time in the care of her loving and competent medical team that fuels her to become a doctor or a nurse or a therapist. At a time when the world would point us to fear and sadness, we held vigil for joy. 

I don’t mean to be Pollyanna here. I know that Joey will face real challenges.  The adults we’ve come across with CP talk about frustrations dealing with their own body’s limitations, the hurt of being shunned by their peers, the physical pain. But the world does a good enough job on its own of reminding us of the struggle. It doesn’t need us to pile on, for Joey or for ourselves. 

I also know analogies are rough. Hew too closely to the comparison and you sand off the unique contours of either the queer experience or the CP experience. To be blunt – having CP is not the same as being gay. There will be times when Joey’s pain matches my own and I will show her my scars to teach her that we hurt and heal and get stronger. There will also be times when her struggle is distinct from mine and I will simply have to sit and hold space with her.

But for now, the most powerful and subversive thing I can do is carve out room for joy. Later, I can draw from my own experiences as a member of a marginalized community to model for her how to stare down shame and pity.  Find your people. Surround yourself with chosen community. Learn your history. Demand full inclusion. And, beyond all else, celebrate. Dance in your homes and gather in the streets. 

The late Ruth Bader Ginsburg taught us that, “So often in life, things that you regard as an impediment turn out to be great good fortune.” I don’t know how the karmic scales will balance triumph and defeat in Joey’s life. But I know the universe rarely gives with one hand. It doles out both pain and blessings. In light of this, my husband and I have decided to model what we have learned. As a gift to our daughter who has enriched our lives in unimaginable ways and who has filled our hearts with deep abiding love, we will invite grace in. We will hold space for the full range of happy possibilities which may unfold. We will make room for joy.

Brian C. Johnson is the CEO of Equality Illinois.

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