Easy on Gloves for Child With Disability

When I was growing up, my mother had this blue diary.

It had this soft, marbled cover, and the edges of its pages were worn, hinting at how regularly it was picked up, written in and reread. It was forever by my mom's side. I'd spy it on her bedside table or on the arm of the couch. Even before I could read a single word, I knew that diary was an object of power, a totem with meaning beyond its purpose.

It's tempting to say the diary was about me. To a point, that's true. But thinking about it now, the diary was really just as much about Mom — and about why she didn't want to bring me home when I was born.

Like Mom's blue diary, I was a bit rough around the edges. I was born with a huge tumor in the center of my face and mangled legs. The tumor — a tennis-ball-sized, bulbous growth — pushed my eyes to the side of my head. I was born in 1972, before pre-natal scans, and after four other siblings. My mother had no reason not to expect the healthy child she believed was on its way.

Robert Hoge as a baby
The author as a baby.

Courtesy of Robert Hoge

But Mom must have had an inkling something was wrong during her labor because when it ended, the first words out of her lips weren't to ask what sex her baby was but whether I was okay. The doctor was blunt: "No, Mrs. Hoge. He has a lump on his head and something wrong with his legs." Mom didn't see me before I was sent to the hospital's intensive care ward. Concerned for my health, my father saw me — strange tumor, wide-spread eyes, mangled legs and all — before he visited my mom. He described what I looked like and together they cried.

"Perhaps he'll die," my mother said.

"No chance; he is too strong and healthy," my father replied.

Mom refused to see me for a week. Eventually though, with encouragement from one of her doctors, she made the trip to the hospital nursery. When she looked into my cot, she decided she wouldn't take me home.

"I wished he would go away or die or something," Mom wrote in her blue diary.

"I wished he would go away or die or something," Mom later wrote in her blue diary. "I told the hospital staff I didn't want my baby. I wouldn't under any circumstances take it home.

"I didn't feel anything for this baby. I had shut off completely. I had made up my mind I was not taking him home."

My mother did start visiting regularly, but she still couldn't see herself bringing me home. One day after returning from a visit she told her sister, in a moment of desperation and honesty: "He is so ugly."

Robert with childhood friends
Robert with his childhood friends

Courtesy of Robert Hoge

Eventually my mother reconciled my appearance and her feelings. She separated her shock from her concern over how she'd raise a child with major medical conditions. She split the embarrassment she was concerned about feeling if people stared at me from her worries over the impact bringing me home would have on the rest of her children. And one-by-one she started working through the issues in her mind — sorting the significant from the slight.

After much thought, my parents gathered my four siblings together one morning and took a family vote about whether I should come home. One after the other, my brothers and sisters said "yes" to me coming home. And home I came.

By the time I was 10, I had some understanding of my mother's feeling when I was born. From time to time I'd ask her to read "from the book about when you didn't want to bring me home." My parents would talk to me honestly and openly about their feelings when I was born. It was ultimately vital in helping me understand my place in the world.

But it wasn't really until I turned 30 and had my first daughter, that I had gained a proper sense of what my mom must have gone through.

Despite scans that suggested otherwise, I had a deep dread during my wife's pregnancy that I would transfer my defects to my child, despite them not being genetic. The anxiety was directly proportional to the excitement and love I had for the imminent arrival. In the time before my wife's first pre-natal scan, my mind raced full circle: Would my daughter have a disability? Would she look 'normal'? Would she be healthy? Would she have issues that caused teasing and bullying? Would it be my fault if she did?

Robert Hoge and his parents
Robert and his parents.

Courtesy of Robert Hoge

The logical person to talk to about all of this was my mother, but she was five years dead. Despite all the conversations we'd had, we'd never discussed this. I wish we had.

I thought I knew what my mother had gone through when I was born, but when I found out I was going to be a father, I realized it was at best an intellectual understanding. Expecting a child is a tornado of emotions, and even with all the evidence to suggest otherwise, I couldn't shake the concern that my daughter would come out "wrong."

Ultimately, it was my mother who helped me through that time — or at least her memory. Despite coming from a working class family, with four other kids to look after, and no notice she was about to give birth to a son with significant issues, she did okay.

She made it. I could make it, no matter what happened.

The lesson I was left with was that our children are not born impeccable only to have their perfection worn away over time. No, they are born as they are born — beautiful, different, disfigured, challenged. Perfection actually comes afterward. It is created when we take that beauty, that difference and those challenges and write the stories of our children word-by-word, decision-by-decision, day-by-day, and fill up the little blue diaries of their lives.

Robert, his father, wife and daughter
Robert, his daughter, father and wife.

Courtesy of Robert Hoge

Robert Hoge is the author of Ugly , a memoir for children about growing up disabled and deformed.

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Source: https://www.goodhousekeeping.com/life/parenting/a40369/robert-hoge-ugly-essay/

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