Alfonso Millie Gennarose

INCLUDEnyc Voices

Jean Vicky Lori

Don’t Call Me Brave


Left to Right: Rebecca (10), Sophie (17), Justin (15)

I sat in the pediatric ICU waiting room. I’d just finished pumping. I called to check on my two-year-old daughter, and when I looked up from the phone my obstetrician was standing in front of me.

She asked after my health and that of my newborn son’s, and then put her hand on my shoulder and said, “You are so brave.”

I wanted to slap her.

Until I started having children, I marveled at my good luck. My husband and I had carefully planned when to start a family and waited several years after we were married to get our lives together.

When I finally got pregnant, I realized that I was great at it. I could eat as much as I wanted, my skin glowed, my hair got thicker, and I had virtually no morning sickness. I gained the right amount of weight and lost it quickly. My beautiful daughter Sophie arrived after a long, difficult labor. Despite the usual sleep deprivation all new parents suffer, I felt as though my life was perfect.           

And if one child was great, two would be better. I wanted them close in age. I would gently explain to Sophie, when the time was right, that she was going to get a new baby and could be my “little helper.”

Sophie was a quiet, timid child who rarely smiled and cried easily. She seemed to be happy only when my husband and I were reading to her.

“She’s shy,” we told each other. “She’s sensitive. She’ll be a bookworm like we were.”           

It was only after two years, when she still wasn’t speaking and I was three months along with Justin, our second child, that we realized there might be a problem. And not until the night that Justin was born blue and “floppy” (as the doctors termed it) did we realize that something was up with our children.             

We had had genetic testing done before trying to get pregnant, for Canavan disease and Tay-Sachs and cystic fibrosis. We had certainly never heard of Myotonic Muscular Dystrophy. We didn’t know that it was usually an adult onset disease which, when passed on from the mother to the children, usually results in severe physical and cognitive delays. And we certainly didn’t know that I was a carrier.           

I had been getting mild cramps in my arms and hands since I was in my early 20s, but assumed it was just “one of those things” and never investigated. Maybe I didn’t really want to know. One trip to the developmental pediatrician and one to a geneticist (with both babies in tow) confirmed the diagnosis.           

I felt naïve and foolish, as if I had been duped. Mostly I felt angry. And all the platitudes offered by well-meaning friends and relatives made me angrier.

“God only gives special children to special people that can take care of them.”

“Special children are a special blessing.”

“I don’t know how you do it.”

I hated it. And I hated the pitying looks (and unspoken “Thank God it isn’t me”) from people who had “typical” children, all of whom were quick to tell me I was an amazing mother.

“You are so brave.”

That particular phrase always seemed especially irksome. To me bravery connotes a choice. I didn’t feel I had any choice about whether I would raise two children with disabilities. Moreover, I felt like a fraud.

I wasn’t an amazing mother. I wasn’t brave. I yelled at my kids. I seethed at a God who would do this to me. I decided that maybe there wasn’t a God after all. But I didn’t really want people to find out the truth. Better to shrug my shoulders at the pitying looks and cry in the shower. And throw out the cards and gifts and “What to Expect” books and swear to never have another child.      

And yet I still loved my children desperately, beyond reason. I was completely smitten with Justin, who was a beautiful baby. And with Sophie, who looked so much like me that people called her my clone. By age four, Sophie (who still barely spoke) had discovered that saying anything – even “Hi” – would melt my heart and get her off scot-free after she scratched up the television, or threw my jewelry out the window, or dumped a bottle of baby powder all over our bedroom.           

My husband and I took the kids on walks around the neighborhood or to the park and beamed when passers-by cast “fond looks at our bespectacled children” (both of them started wearing glasses at two). It wasn’t all bad, I consoled myself. My secret was safe. My anger receded slightly.              

But there were plenty of miserable days in between. There were rainy days when I schlepped both children to physical therapy. Sometimes, standing in the wreck of my house while both kids were wailing, I would start to laugh. It was all so ludicrous.

As the children got older, things got both better and worse. Better, because they were safely ensconced in special education schools. The endless visits to doctors and specialists had abated (there is no treatment or cure for Myotonic Dystrophy). Worse, because they were older and still doing the same things that babies do.

So eight-year-old Sophie was still having tantrums and watching incessant reruns of “Teletubbies.” And Justin was still in diapers at three and four and five. (He still is at 15.) When he was nine, he was diagnosed with Type 1 Diabetes: an offshoot of the muscular dystrophy. “Child develops diabetes. Parents out clubbing. Film at 11,” we used to joke. Both my husband and I have developed a wicked sense of black humor over the years.          

When Justin was five, I had my third (and last) child. My now 10-year-old Rebecca, who is typically developing. It was almost like being a first-time parent when she was born, because she was so different from Sophie and Justin. And while she can be moody (something which will only get worse as she gets older, I fear) I am almost looking forward to the day (three or four years down the road) when she screams, “I hate you!” and slams the door. It sounds so “normal.”          

Meanwhile, Sophie is now 17, living at her school during the week, and coming home on the weekends. She has made progress, both socially and emotionally, since she moved in last year. She talks about her friends (she’d never had friends before) and can carry on simple conversations.

I know the road ahead will not be easy for Sophie or Justin. They both have severe global developmental delays. Justin may never speak. I despair of toilet training him. He will hug anyone, anytime, including total strangers. Sophie is still withdrawn and remote, and much of what she says is repeated from television or the PBS Kids computer games that she plays incessantly. They receive OT, PT, and speech therapy at school.           

I worry about what their futures will be like, especially when they are older and the physical aspects of the disease become more pronounced. But I have learned to understand their limitations. And I have learned to accept my own.

I still get impatient and angry sometimes, I am too cynical, and I suspect that I drink too much wine. But I think we are all doing the best we can. I hold on to that belief.         

I still get the occasional “You are so brave” from people I meet, but it is mostly because I have three children, not because two of them have disabilities. And when I think about what I have been through during the past 17 years, I still don’t feel brave, but I don’t feel like a victim either. I just feel lucky.