Recently, a pregnant 29 year old posted in a facebook group for female carriers of Fragile X Syndrome. She had tried to get pregnant and when she unexpectedly did, she was thrilled. Then her hopes were dashed when a test revealed she is a carrier of Fragile X Syndrome. She did not believe in abortion but came to the group for advice because she began to question that belief.
Women every day are making tough decisions, often in isolation. I am concerned in this political climate that singular concerns and experiences get lost in the din of the noisy singular thinking of political movements. So here I respond to her question with reflections on my own experience.
My twins are 24 years old. One has Fragile X, the other has Koolen DeVries Syndrome. Our FX son has language and behavior challenges, sleep issues, mood swings and sensory sensitivities. I love both of my twins more than life itself. The supreme value of their lives has never been in doubt. I have been a strong advocate for both since their birth and with some excellent community and school supports, have advocated tirelessly so they could lead meaningful lives in our community. Our sons have exceptional resources, two parents (that’s us) who are persevering, with financial resources enabling their best lives to be built to the best of our abilities and to the best of theirs. We are succeeding. But while money is worth a lot, it is worth little if social support is not adequate. And it is woefully inadequate.
I had amniocentesis when I was pregnant. Because of family history (I have a brother with autism) and genetics knowledge at that time, our twins should have been tested for FX but through physician oversight, the twins were not tested. However, they each were found to have an inverted 7th chromosome, but because I also had the inverted 7th, I was told there was nothing to worry about. If something was in fact found to be awry I’m not sure and will never be sure whether I would have terminated the pregnancy or not. And if my decision would have been to give birth, that decision might definitely have terminated my marriage. Even as I agreed to have the amniocentesis, I knew in my heart I couldn’t be sure I could actually go through with terminating the pregnancy, even if something was found to be radically wrong. Looking back I know that divorce may have been the outcome because the pregnancy was mine and I just wasn’t as sure as he was. Those circumstances were never tested.
Then came the birth of our twins and life unfolded. Over the years, the personal cost to Howard and me, each of us, our marriage, which is strong in spite of this, is huge but we accept its necessity given the realities. We remain devoted while sacrificing a great deal of ourselves for our sons. The love is strong and unerring. In spite of a solid financial footing, our sons’ future is extremely vulnerable. Supports for adults with disabilities are treated like privileges, instead of opportunities to benefit all citizens. Consequently, it takes superhuman effort to provide reliable staffing that ensures safety and well-being right now and nearly impossible to provide that for the future. That is terrifying, even as we will pursue creative options with all our might. I have long felt that families like ours not only live with high levels of stress, we also live with varying degrees of continual distress.
Howard and I have and will always rise to the occasion for our sons. We have known years of love and enrichment. We understand the lives we are given are ours to power with love or to squander. I want to be very very clear. There has never been one moment in time I have ever wished either of my sons were never born. They are sparkling jewels of humanity and my life has been enormously enriched by their existence. There is almost no sacrifice I won’t or haven’t made on their behalf. But there is absolutely zero doubt in my mind, if I had had a crystal ball then, I would have terminated my pregnancy. There is no crystal ball and of course we cannot altogether determine the degree of disability in utero. However, knowledge is power. If I had terminated my pregnancy, we might have been given another even more challenging life. Who knows?
But when medicine and science can gift us with the knowledge to choose not to bring a child who we already know will most likely not be able to fend for him or herself in this world where it is already very tough for those of us who can, I think it can be a disservice. This decision would have been based on the high probability of enormous constraints on my own life and other family members, but even more on the disservice I would likely bring to these unborn children by leaving them as vulnerable adults with fragile futures extending way beyond our ability to ensure their safety and quality of life.
I have no crystal ball. That is why I cannot abide by the popular notion that G-d gave us children with disabilities for a reason. To teach us and the greater community lessons at their expense? I cannot believe a loving G-d would make my children sacrificial lambs for my betterment. I also cannot abide by a G-d who expects me to simply accept everything without question that comes my way, especially when it involves the deepest parts of my own life. Most of all I cannot abide by any human being who proclaims what G-d’s plan is for me.
I have no crystal ball, but I abide by a G-d who reveals to me my limitations and helps me grow my capacities for wisdom, faith and love. And I abide by a G-d who can comfort me. But before most families like ours stand a chance to sleep at night or die in peace, far more bridges need to be built, support teams formed, safe networks established and much more evidence we are bending that arc in the right direction.
In a better world everyone counts. In our country today, that is just not how it works…yet, and until the messiah comes there will never be a perfect world. These decisions are among the hardest to make and belong to each woman. More than ever, a pregnant woman needs access to medical information, personal guidance and more options to choose, not less, in order to determine the future of her family.
Amy Brenner Mitz is an ordained cantor who has served congregations in Chicago, St. Louis, New York and New Hampshire. She has an older brother with autism. Presently she lives in northern New Hampshire with her husband and 24 year old twin sons, one with Fragile X Syndrome, the other with Koolen DeVries.