A Beautiful Risk

On June 6th, I will undergo my fifth neurosurgery in four years. I will do this because I have VHL, a genetic, highly hereditary disease that neither of my parents has. Lucky me. I am what is considered a new mutation. I recently read that the odds of getting VHL as a new mutation are something like one in 4.4 million. What are the odds of my offspring having it? 50/50.
My husband, Michael, and I have options. We could choose to adopt. We could choose to undergo PGT, pre-implantation genetic testing, wherein fertilized eggs are tested for the VHL gene, and two or three of those without the defect are implanted in the womb. Or we could roll the dice and take our chances.
It seemed an impossible decision, and one that we struggled with mightily. After much talking, research, worrying, and more discussing, a final decision emerged. I see now that the choice was made from the start. it was the only real choice for us. It was the right answer, the only answer for us, from the moment my doctor said that we could start trying to get pregnant later this year. We would roll the dice.
We weighed all the other options because we are thorough, responsible people, and okay, because I am an obsessive worrier, but the answer was there all along.
My best friend Molly has a blog. Every month, she writes a letter to her son, Max, who gives the absolute bestest hugs of any almost-two-year-old ever. In her latest letter to Max, Molly hit on why our choice was the right one for us. She wrote, "... you never love anybody like I love you without the realization that people are vulnerable, and loving them makes you vulnerable too."
That line reminded me of another doctors appointment. this one ten years ago. It was the first appointment that Michael attended with me, and it was a month before we were to be married. I was told that I had a spinal cord tumor that was showing signs of growing and might need to be removed soon. I was devastated. How could I subject Michael to that? To the symptoms, the surgery, the worries? I loved him, so I was willing to spare him all that, and I gave him the option to back out of the relationship. Needless to say, he did not take me up on the offer. He loved me enough to go through the symptoms, the surgeries, and the worries. I learned that day, and was reminded again after reading Molly's letter to Max, that unconditional love, at its core, is about risk. It is a willingness to risk the lows for a chance at the highs, to brave the darkness to have a shot at the sunshine. I have been blessed with much unconditional love in my life. My own mother did not have VHL, had never even heard of it in fact. She has sat beside me through countless surgeries, has watched me get sick, get mad, get frustrated, and then get better time and time again. I asked her if she had known I would have VHL, if some divine being could have told her about the person I would become and the trials I would have to endure, would she have done it differently? Would she have made a different choice? her answer was emphatically and constantly, no. She loves me unconditionally, and unconditional love involves risk.
this Friday night, my cousin will be attending the graduation of his daughter's high school class. but his daughter won't be there. She was killed in a car accident almost a year ago. He lost his wonderful, smart, loving, angel-voiced daughter. Would he trade those seventeen years to make his unimaginable pain go away? No. Unconditional love involves risk.
So Michael and I have decided to take our chances. Naturally, we hope our offspring will not inherit the VHL gene. We hope he or she will be bright, compassionate, independent, have Michael's dimples and twinkling brown eyes and my hair-- Oh please, my hair. But regardless, we will love her or him unconditionally. To love anyone is a risk, it's true, but what a beautiful risk.