I did not know in advance that my son Kory would be born with Down syndrome. I was 38 and I knew the risks, but I declined to have the amniocentesis procedure to test for Down syndrome. I would not have terminated the pregnancy if the test came back positive, so why risk the complications of the procedure? Kory arrived a month early and required an emergency c-section. My husband, as many parents do, experienced anger and sadness about the lost hopes for his first son.
But I had thought I would never have children and had not planned this pregnancy. So I really had no preconceptions about my baby. To me, Kory was who he was, and now it was up to me to learn to be his mom. That learning started immediately. From the beginning, Kory had trouble eating sufficiently and it was three weeks before we could take him home from the hospital. Several months later, he began having seizures, and it was only then that tests showed that he had had a stroke in utero, which undoubtedly caused many of his early problems.
In addition to these serious health conditions, Kory also had extremely painful digestive problems. My husband and I spent hours and hours every day and night rocking and bouncing him as he cried and cried with stomach pains. Only years later did we discover that he cannot digest large amounts of fat, whole grains and fruit skins.
But in between those bouts of agony, Kory was and is the happiest, most purely loving being I’ve ever known. Before Kory, I had been a civically involved, fully employed, independent woman. Overnight, I became a full time mother of a child with multiple disabilities and needs. And I would not trade my life now for anything in the world. Because in the midst of all of the stress and trauma, I’ve learned what true love is.
Kory’s cry is the most honest and pure cry you’ve ever heard. When Kory laughs, you feel it deep down in your soul. When he looks up to give me a kiss, I feel so honored. As a Unitarian Universalist, I believe in using both my mind and my heart to seek life’s meaning. But when I look at Kory, pure and simple, I see God.
Many women who want to have children choose to have an abortion when they learn that their fetus has Down syndrome. I believe firmly in a woman’s right to choose. But I just want every woman to know the many faceted gift having a child with Down syndrome and other disabilities has been for me. I now work from home part time as a writer – a career I absolutely love and would never have found had it not been for the unexpected gift of Kory.
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