Finding joy even when kids aren’t perfectly healthy

Children’s Medical Center pediatric hematologist-oncologist Paul Harker-Murray talks about the relationships he builds with the families of his cancer patients and what it’s like being the father of a child with Williams syndrome.

“What you want most for your children is for them to be healthy,” says Dr. Paul Harker-Murray, a cancer specialist at Children’s. But as a doctor who often has to deliver difficult news to families, he knows this hope isn’t always realized. And as the father of a child with Williams syndrome, a genetic disorder that results in physical and developmental delays as well as chronic medical problems, this fact has hit home on a personal level.

Dr. Harker-Murray and his wife, Amy, an adult oncologist, have three young boys. Matthew is 4; Alexander is 2; and Harrison is a newborn. Matthew was diagnosed with Williams syndrome when he was 4 months old.

How has Matthew’s diagnosis affected your family?
“Early on it was hard. The weekend we got the diagnosis was especially rough. What you want most for your children is for them to be healthy. Based on what I knew about Williams syndrome I was able to say to my wife, ‘Matthew will have some challenges, but he will laugh, he will run, he will play, and he will love. He will have a life full of joy.’”

“The strength of our relationship is such that we were able to consciously say to each other: ‘This is going to be stressful, but we’re not going to take the stress out on each other. We’re going to use this to make our relationship stronger.’”

“My wife and I have been blessed in many ways, and although we were a little overwhelmed at first, the reality is that as a two-doctor family, we should be able to raise a child with a developmental disability, and so we moved forward from there.”

Matthew is a delight
“Now, at the age of 4 years, Matthew is a delight — he has a smile that stretches ear to ear and can light up a room. He is making strides at his own pace, is accomplishing new tasks every day, and we are incredibly proud of him.”

“Still, some days can be difficult. For example, when we go to the park, no matter how much fun we are having, it is hard not to notice the difference between Matthew’s skills and those of the other 4-year-olds. That being said, we remind ourselves that ‘Matthew will do what Matthew will do when Matthew is ready to do it.’ We love him for who he is rather than spend our time worrying about his limitations.”

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