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My Daughter With Down Syndrome Showed Me Life Is Precious

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My first child, Kate, was born on September 5, 2001. Six days before the 9/11 tragedy that tore into the hearts of all Americans. As our country was grieving over the loss of so many precious lives, I was bringing a new and wonderful life onto this planet.

Early in the pregnancy we were told by doctors to have a blood test to look for genetic markers for a disability. Doctors here in the U.S. do this blood test  as part of routinely prenatal care. The test came back a false negative, which means it indicated our daughter did not have the condition tested for when in reality she did.

I remember distinctly the fear I heard in my nurse’s voice when Kate began to crown. As I was about to push she said, “Wait!”and she ran to the hall to yell to the doctor, “We’ve got a small one!” Kate was unusually small for a full term baby, and I am not a small woman by any means. When I pushed her out I remember hearing a very faint cry and silence from the nurses as they pulled her away to examine her. After they cleaned her off, they handed her to me and said, “You may hold her briefly, but she is having some trouble breathing so we will have to take her to the NICU.” I remember looking into her beautiful eyes with love and joy, and saying to my husband, “She looks like she has Down syndrome.” I believe I was in shock, but mostly, I worried about her breathing. I was scared for my baby’s life and wanted her to live.

As they swept her off to the NICU, it seemed like hours before my pediatrician cam back into the room. She sat down next to me with tears in her eyes and began to apologize she did not know Kate had Down syndrome prior to birth. She actually broke down and cried and I offered her words of comfort stating, “It’s OK!” She’s my daughter and I love her. It was an odd experience. The first of many uncomfortable interactions between myself and other health professionals who repeatedly seem to apologize to me for my daughter’s existence.

Did I grieve at the loss of the so-called “normal” child. Yes, I did. As a social worker working with individuals with disabilities, I understood there may be some challenges ahead. But, who among us as parents is not challenged by parenting our children? It is one tough job with no instruction manual. The parenting challenges may be different, but I now see they are only different because each life on this planet is different. No human being is the same, no life is more valuable than another.

My precious daughter Kate only lived for 10 months. She was medically fragile and we spent most of her short life in and out of the hospital. At one point she was on 21 doses of medication a day. She had open-heart surgery at 4 months old by one of the best surgeons in the country here at Loma Linda University Hospital. Tragically, Kate developed leaks in the chambers of her beautiful heart shortly after her surgery. She died in her crib of congestive heart failure on July 9, 2002.

Having the chance to know and love my sweet girl will always be one of the greatest privileges of my life, just as it has been raising my two other children. I was afraid I could never love my second and third child as much as I loved my Kate, but the opposite was true. Knowing and loving her gave me a greater love and appreciation for my other children and for all life.

Life is precious. Never apologize for it, and cherish every minute.

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Originally published: April 19, 2017
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