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Home Your Stories "No" to Grief!
"No" to Grief! | Print |  E-mail
I had to write after reading your article, "The Set-Up for Grief." Three years ago, when I was pregnant with my son, we learned he had the markers for Down syndrome. The perinatologist asked if we wanted to have an amnio to confirm, and he explained the risks. Risk a miscarriage? "If he does have Down syndrome, you can't change that," he said. I did not want to take any chance that would end my son's life. I've known too many others who have experienced that form of grief—and it is that grief I fear the most.

When our son was born via c-section, the doctor explained that our newborn baby had the physical characteristics of Down syndrome. Because of minor heart issues and jaundice he spent a few days in the NICU. None of the medical staff addressed the fact that he had Down syndrome, instead waiting for the geneticist to tell us the results of the labwork. One nurse commented on how well we were handling the diagnosis. "Really?" I asked her. How else were we supposed to react? We had a beautiful boy, who looked almost identical to his sister when she was brand new, except he had more of my features (which I was excited about!).

When the geneticist sat us down and confirmed the diagnosis, I asked, "What does this mean for our son?" Of course, she didn't really have an answer other than generalizations. But nothing she said changed how I felt about my son: that I would do everything to nurture him and raise him to be an independent, successful, and happy adult.

That same day I purchased the book Gifts. It includes journals from parents who write about their experiences of having a child with Down syndrome. My husband picked out the parent guide. After reading part way through Gifts, I put it down, and never picked it up again. It made me sad. I couldn't handle the common theme of parents who were "devastated" and "sad"—who "grieved" for the "loss of the perfect child"—who questioned what they had done to "deserve this" and "why them?"

My son is my joy, he is my creation. I gave him life and had the wonderful experience of growing him inside me. I felt no grief, no disappointment. After meeting many parents and reading stories and blogs, it seemed I was in the minority. That, I, in fact, was different. I didn't care that he had Down syndrome. All I cared was that he was healthy and alive! Knowing that other parents seldom felt the same way left me feeling isolated at times.

I believe the potential to be treated terribly by others, bullied, or teased is the same for him as for my daughter who doesn't have a disability. And his potential to be a successful and happy adult is also the same as my daughter's. I don't have any more worries, doubts or fears about his future than I do my daughter's. I have no illusions that people are cruel and that they can be even more cruel to those they don't understand—those they consider different. What I hope to do is equip both of my children with the understanding and knowledge that people who are cruel should never be allowed to define them and that the only opinion that truly matters is their own.

I have heard parents discuss the issue of, "Would you change him/her, if you could?" My answer is NO! My first thought is that I would want to take challenges away from him, but challenges are what help define us and are wonderful teaching moments. If my children didn't have challenges growing up, how would they cope as adults? How could they learn to figure out life and make it their own? I love both of my children for who they are, imperfections, differences, and all. They are both beyond beautiful to me—the whole of who they are. And I am immensely proud to be a mother of a child with Down syndrome. Your article reinforced my belief that my initial reaction to my son's diagnosis is okay—thank you.

Kelly

 
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