I have been dreading the news of his death for a long time. My friend Steven Parker told me about his diagnosis of Mutliple Myeloma, a rare form of cancer, three years ago and it changed the nature of our relationship in a profound way.
Now every time I met him, every time I heard from him (he loved email), it seemed like a gift, an unexpected bonus.
I think Steven knew that was what might happen and so he told very few people about his condition. When he told me, he asked me not to say a word about it to anyone. He didn’t want anyone treating him differently, treating him as if he was precious.
The problem is - he was.
Precious. Irreplaceable. One of those human gems you find only a few times in a lifetime.
I first met Steven 15 years ago. Moy Moy was four years old then and we still didn’t understand what exactly it was which made her different from our other two children. At that point, it was simply an undefinable sense that something wasn’t quite right. At that point, Moy Moy could talk and walk and she had pretty much mastered all of the basics: she fed and dressed herself, she was toilet trained, she was cheerful and funny and busy with her life. But something was missing.
My brother’s wife Sally, a nurse practitioner, suggested I take her to meet Steven, the doctor with whom she worked at Boston Medical Centre. He was a developmental pedatrician, she explained, and had vast knowledge and experience with children like Moy Moy. At that point, I knew zero about “children like Moy Moy.” At that point, I only knew about Moy Moy, Cathleen and Anand. I had never even heard of developmental pediatrics. But I knew and trusted Sally, and she said we should meet Steven.
That visit with Steven, which lasted several hours and stretched over two days, was the beginning of a whole new journey for me and for our family and even, in some ways, for Dehradun and all the children who have come to Karuna Vihar in the intervening years.
The first day, Steven played with Moy Moy, chatted with her, observed her, talked to me, thought and reflected. The second day, he called in a neurologist to meet with me and had a bunch of his students observe me with Moy from the other side of a two-way mirror. Then he sat down with me while Moy Moy played with one of the nurses and told me what he thought was going on.
“What a great kid,” he started out. “She’s got a sense of humor which would be surprising in a child twice her age. She’s funny, she’s curious, she’s happy and she’s obviously deeply loved.”
What a great doctor. Who wouldn’t listen up to whatever he was going to say next? I knew there was more to come, and that it wasn’t going to be good news, but I also knew, felt it deep in my heart, that this man had taken the time to get to know Moy Moy, and that he cared about her and he cared about me.
I listened.
Steven told me that there was “a lot of scatter”. Her receptive language was right where it should be, that of a four year old, but what she could express was way below - more at the level of a two year old. Fine motor skills were a worry, while gross motor, except for a slight limp, were good. But it was Moy’s lack of imaginative, symbolic play that was his biggest concern.
As he spoke, I finally found the courage to ask him the question which had been haunting me since Sally first suggested we go to meet him: “Steven, do you think Moy has Cerebral Palsy?”
Now, looking back, with the years of experience I have and the close personal relationships I have developed with so many people with CP, my terror seems almost touching. But back then, CP was, in my mind, a spectre, a medical term of crazy proportion. I had collected money for CP research when I was in high school and I remembered the sad pictures of “CP Kids” on the tin can I took from door to door. “Not my child!” I felt like shouting.
Steven’s look was gentle. “Well,” he said, “if you want a term for it, yes, I guess you could say she has CP. But I’m not sure how helpful that would be. I think it’s better to just think about Moy Moy as she is and how you can best help her to continue to develop and grow.”
By now, I was in a panic, and on the verge of tears.
“Do you think,” I asked, hesitatingly, “if we had known earlier, we could have done better?”
Now he looked genuinely baffled. “Better? Better than what you done?” He shook his head. “Jo, I marvel at what you have done, totally on your own, with no diagnosis, no special needs professionals, all on your own. This kid is incredible. You couldn’t possibly have done better.”
This set the tone for both my relationship with Steven and my own evolution as the mother of a child with a disability.
Over the years, Moy’s condition deteriorated slowly and bewilderingly and Steven was with us every step of the way, suggesting further tests, new therapies and other doctors we could meet, but also simply being there: reassuring, counseling, encouraging.
He was also delighted and proud of the way Moy Moy’s difficulties inspired the opening of Karuna Vihar. Every time we met over the years, he made a donation to the school and was always eager to hear more about its development.
This photo was taken in 2006, the last time he and Moy Moy met. By then, she was in a wheelchair and getting her meals by tube. She lit up when she saw him, as did he: they always had had a special friendship and I think she understood that he was one of her dearest champions.
Now he is gone and there is a hole in this corner of our universe. He was a darling man, with a wonderful sense of humor and fun. He was eager, curious, generous and oh, so wise! Ravi, Anand, Cathleen, Moy Moy and I extend our deepest sympathies to his wife, Karen, and his brother, extended family and the wide circle of colleagues, friends, parents and children whose lives he touched.
Entered By: Jo Chopra McGowan
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