And suddenly I was where I never want to be - In the dark.
I had never heard of anencephaly. I didn't know what a neural tube defect was. I'd only skimmed my copy of "What to Expect When You're Expecting," thinking women had been having babies since long before I'd ever have one, and I'd probably figure this pregnancy thing out too. Upon later review of the book's section on neural tube defects I found only a short blip about the freakishness of the occurrence of such defects, and my options to end the pregnancy if my child were determined to be non-viable.
I didn't even know that my child was a boy. He was a sweet, baby boy, and I quickly learned that there wasn't a single thing that a doctor, or 100 doctors, could tell me that could make me stop loving my son.
So I desparately searched the internet for answers, finding haunting images, endearing stories, support groups where I found women who I clung to throughout the duration of my pregnancy, and ultimately, information about the Duke Center for Human Genetics Neural Tube Defect Research Study.
Through my studies of the information found on the internet I discovered that my son's death as a result of his having anencephaly was inevitable but I was determined to show anyone who was observing us that his life had value, like all human lives have value, even if it would be short. We volunteered to donate Gabriel's umbilical cord blood, and samples of his parents' blood, to Duke University's Center for Human Genetics.
Somehow the answers provided by Duke had to be enough. It had to be enough that through research we could be assured that we didn't do anything wrong; that sometimes anencephaly just happens; that the chances of a reccurrence were slight, but that there were things we could do to reduce even that slight risk (see January 31st's entry on folic acid). It had to be enough to know that through the donation of our son's blood, someday we might have more answers. Someday some parents might not have to hear the words "incompatible with life" because when we heard them two years ago we chose not to run from them, but to confront them.
It wasn't enough. I couldn't stop there.
For the last two months I have been selling t-shirts with a logo representing Gabriel and anencephaly awareness to raise funds for Duke Center for Human Genetics. Thanks to the generosity of our friends and family, the first installment of the funds raised is being sent in today's mail. You all, through your kindness and charity, have helped me to raise $360 dollars thus far to send to Duke in honor of a little boy who changed your world.
Rest assured that the journey I have taken has been difficult. I promise you, I don't look at your children without thinking of my own. I don't hear your stories of learning to tie shoes, losing teeth, academic honors, athletic victories, or graduation, and fail to think about what I won't experience with Gabriel. Still, you have made my son's life even greater than I ever imagined. You've taken the darkest time in my life, and turned my son Gabriel into this shining light of hope burning brightly in so many hearts.