To Be or Not To Be

My ovaries are filled with eggs. By some stroke of fate, not all of them were created equal. One quarter are normal, carrying the potential to create a genetically sound offspring. One quarter are do not contain enough genetic material and are completely fucked—no embryo formed from one of these eggs could grow into a human that could survive outside the womb. One quarter carry too much genetic material… a fetus formed from one of these eggs could potentially survive, but would invariably suffer from physical and mental delays for its entire life in cruel world without that doesn’t offer the kind of love and support special needs people (especially adults) deserve. The remaining quarter are like the germ I inherited from my father: they contain the appropriate amount of genetic material, but it’s scrambled, meaning the resulting offspring will most likely develop “normally,” but will have the same proportion of bad eggs (or the male equivalent) and will be forced to roll the dice for themselves when it comes time for them to start a family of their own.

I’ve known in vague terms that something was off with my chromosomal makeup since I was very young, though I’ve only learned in the last year how shitty the actual odds are. It was one of the first things I told my now-partner when our romance was young…

Years before we married, I started looking into options. How could I ensure that this curse ended with me? Science and genetics are accomplishing seemingly impossible things. I thought there had to be an option for people like me—a way to literally weed out the bad eggs and give our future children the best chance possible at a healthy life. I started down that path six years ago.

We’ve explored the options, and aside from avenues, both scientific and social (adoption) that would start at around $20,000 per attempt (the success rates and wait times for which are not encouraging), rolling the dice seems like the only option we have.

On the surface, taking the chance and trying to conceive naturally might not seem an issue. My sister, whom I love dearly and who is a gift to the world, was the result of the 25% of my father’s little swimmers containing too much genetic material. This surplus of chromosomal material guarantees that the child will have permanent developmental issues, both mental and physical. My sister’s spirit shines like a beacon of pure joy and kindness—her smile lights up a room, and her laugh is absolutely infectious. However, she is literally handicapped by her body and mind—a condition my parents knew she’d have to cope with her entire life even before she was born.

I love my sister, and even though she might not know it right now, I take her into account in all my long-term plans. My parents won’t live forever… In Georgia,  where they’ve chosen to put down roots, there is no government-subsidized support system to provide a decent life for special needs adults. These individuals are stigmatized in their communities and left high and dry by social services. When the time comes, I want to be ready to help support her—not out of obligation, but because I love her and want to empower her to live her best life. But, with that also comes the knowledge that any long-term plans my husband and I make must account for at least three.

I’ve also seen how much my sister has suffered to live in her body—countless surgeries, migraines, kidney stones, seizures…. The list goes on. She’s a trooper, but there’s no denying that she was dealt a crappy hand from the start. I don’t want that for my children if I can help it.

Aside from the possibility of bringing a child into this world who will be forced to struggle with health complications their entire life as a result of surplus chromosomal material, there’s a 25% chance that the fertilized egg would not contain enough genetic material. My mother suffered the loss of a child as a result of this kind of pregnancy—she carried to term, knowing that chances were slim her firstborn would survive. She delivered, and didn’t even get to hold her child before it was taken by the doctors, where the baby died within the hour. My mother still carries the scars—both the ones you can see and those you can’t. This is where questions of God’s will come into play… and this is where the waters get really dicey for me.

I fully believe that life is sacred. If I’m ever blessed enough to become pregnant, I know I’ll love whatever little thing starts growing in my belly with everything that I am. I’m not in a position where any pregnancy I have will be an unfortunate accident. I want a baby in the strongest sense of the word. But genetics being what they are, any pregnancy for me will be a game of chance.

I’ve always been pro-choice, but personally, I find the idea of abortion terrifying. I want to be a mother, but the possibly having to terminate a pregnancy to protect any chance that my husband and I have at a stable future has kept me paralyzed for nearly a decade. I always wanted kids, and generally, I wanted them early (turning 30 this year, which means things get a lot harder biologically). But, when I’d sit in the quiet and ask myself whether I could make it through this process, voices would creep into my mind—the voices of preachers, protesters, commentators, politicians, friends, family members: murderer.

It went on like that for years. As each possible medical option was crossed off the list, I’d find myself asking the same questions. As time passes, possibilities dwindle, and my body continues to age, the emotional and psychological effects have only intensified. But, with no options that are within our financial reach left, and after years of yoga, therapy, and mindfulness practices that have helped me start to cut through the emotional turmoil, I began to allow myself to ask further questions. If life is sacred, is terminating a pregnancy that could only give the resulting child a body that would make their lives exponentially more difficult and painful (and likely shorter) an act of murder, or mercy? Could it be an act of loving your unborn children so much that you want to give them the best chance possible at life, even if that means, as a mother, subjecting yourself not only to the physical suffering of an abortion, but to the excruciating experience of losing a child?

Maybe I am a monster for having these thoughts, but if I listen to my own heart and learn from what I’ve seen of the world, I don’t think that’s the case. Our instincts to care for our young were developed over thousands of years to help ensure that we, as a species, would survive. During those times’ nature’s hand would ensure that the only the strongest went on to reproduce, often with a great deal of suffering for everyone involved. Now, with modern medicine, we have the ability to alleviate much of that suffering.  Maybe, at this point, we need to accept that natural selection is in our hands.

If, rather than leaving a child to face its fate, we’re in a position to make choices that could help ensure that our children have the best chance at life, maybe it’s time to accept that in order to serve our instincts to protect the young, we might need to empower not just women, but families to take a hard look at their circumstances and make informed decisions when it comes to planning a family. It has taken me literally decades to get to a point where I can even consider the possibility that terminating a pregnancy might be a viable option.

The issues underlying these decisions are not black and white, and all options carry heavy emotional/psychological price tags for all of the people involved—not just potential mothers. I’m not sure what the future will hold for my family. However, I’d like the option to make any choices that lie ahead out of love rather than fear or guilt. Love between my husband and I to respect the promises we’ve made to each other for the future, love for our aging relatives who will inevitably look to us for support in the future, and ultimately, love for the potential children we’d be bringing into a pretty unstable world.

I live in Ontario now, where there are support networks and excellent medical professionals who help folks like my husband and I look at all options and figure out the best options for their families—much of the cost of these services covered by provincial (universal) healthcare. However, I was raised in the great state of Georgia.

I’ve chosen to write publicly about my deeply personal experience because in parallel with the development of my own complex views on this sensitive issue, the State of Georgia (and several others across the US) passed “the Heartbeat Bill,” which places a ban on all abortions once a fetal heartbeat can be detected, which is usually around 6 weeks after conception. The earliest any kind of fetal testing to screen for birth defects and genetic abnormalities can be safely performed is around 16 weeks. I was blindsided by the fact that with the flick of a pen, Brian Kemp, the current Governor of Georgia, was able to rob any families residing in my home state who might be struggling with decisions like mine of any semblance of agency. I know how crippled I have felt, crippled by the fear of isolation from my friends and family back home. I can’t imagine what it must be like for women in similar situations whose choices were made for them on May 7.

I have little hope my speaking out will have any positive effect… I’m just one girl who fled the South long ago. But I need to make my peace. The Heartbeat bill is a failure of human reason, as well as human compassion. Strictly speaking, I’m not in the constituency for any state-level representatives in Georgia anymore. After spending a couple years working in correspondence, I’m jaded enough to know that even if I did, nothing I could say would make a difference. So, I’ll just leave this here, in hopes that if someone else struggling with a difficult choice comes across this post, it might help them feel a little less alone.

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