By Becky Benson
The first time it happened I thought it was great. Easier, less messy, a change up from the norm. Win/win for me. I didn’t particularly like condoms; the feel, the smell, the timeout in the heat of the moment while fumbling over a loudly crackling wrapper. How romantic. And I’m sure my husband was no fan of them, but it did make it better for me once we were done. He’d just pull it off and toss it in the trash. I didn’t have to lay there waiting for him to throw me his t-shirt to clean up with, I could just happily roll over and drift off to sleep.
The only problem with this scenario: we needed them, which made it feel less like a novelty, a change up from the norm, and more like a reminder of what we were now facing, and how in so many ways, our relationship; our sex life would never be the same.
In 2009 my husband, Loren and I had been happily married for six and a half years. Loving, committed, stable. We had two beautiful daughters, Skylar, five, and Miss Elliott, ten months, when we learned that we were carriers of Tay-Sachs Disease. We had no idea this genetic mutation existed in our lineage or that we had passed it on to our youngest daughter, who at this point was beginning to shows signs of missing her milestones as she grew. Watching my seemingly healthy infant unable to master age appropriate tasks such as crawling, holding her bottle, and or imitating our speech, I suspected something much more was going on beside the usual variances in development, and unfortunately I was right. With no treatment or cure, this neurodegenerative disorder would rob her of all of her physical and mental functioning before finally taking her life by the age of four.
That first time having sex with my husband after her diagnosis was chalked full of emotion. It was awkward, as it had been a full month since we were intimate, the longest period in our relationship. But it was also comforting, being with him, holding each other, sharing an intimacy and sorrow mixed together the way only the two of us could understand. And it scared me to consider the future and the potential consequences of what should have otherwise seemed routine at this point in our lives; sex between a married couple.
We’ve had our share of odds to overcome in our relationship over time; we married young, eloping across the state line, career changes, moves across country, having children, deaths in the family, – to name just a few, and through it all we’ve remained committed to each other. It may be easy to see many of the outward ways that such circumstances can affect your normal daily functioning and add stress to your life; new social situations and cultural changes with new jobs in a new state, far away – no friends or family to lean on. And obvious loss, morning, and grief in death, especially when that death is of your own child. Anger, resentment, emptiness, longing. Most of these things are typical and even to be expected, but sometimes there are situations that remain unseen to the outside world looking in. Situations that are much more private and intimate and only known to those affected by them. In the wake of this earth shattering news, we did our best to carry on. To live our lives, to love our family, and to stay connected to one another throughout, all the while physically and emotionally exhausted. We leaned on each other for our strength.
My idea of sex itself has definitely changed over time. From the spontaneous lustful romps of newlyweds who couldn’t pull each other’s clothes off fast enough, to a purposeful route to procreation, and then consistency, a consistency to be relied on as time went by. At this point in our marriage sex was a touchstone in our relationship. It was well known. Though it was routine, it wasn’t mundane. It was comfortable, but still passionate. Not just about a physical connection, but a mental one, and emotional one as well. I’ve never felt safer than in my husband’s arms.
Now, the idea of having sex after finding our any and all of our future children could be born terminally ill was a hard pill to swallow, but we were still attracted to each other. We still loved each other and now the one thing that we should be able to share openly as husband and wife suddenly rocked me to my core. Sex. I craved it, but at the same time it terrified me. Not the act of sex itself, but the potential outcome. Having sex with my husband meant potential pregnancy and we couldn’t risk it. Not again. Not now knowing that every child we conceived had a twenty-five percent chance of being affected by Tay-Sachs.
For various reasons, including our moral, ethical, and religious beliefs termination is not an option for us. I doubled up on birth control methods to avoid becoming pregnant.
The condoms got old, fast. Like I said, I didn’t like them, I’m sure he didn’t. Eventually, one night we didn’t have any condoms left and so we decided to pull out instead. After I came he pulled out and jacked off onto my stomach. It felt sterile, insincere, and not at all like the act of giving yourself to someone though love, and connecting with another person in the most intimate of ways should feel like. This has been our routine for almost eight years now, and I hate it. The desire I have to share this sense of closeness with my husband hasn’t dissipated over time, even know with Miss Elliott’s care a twenty-four hour a day task. She was no longer able to hold her body or head upright, she was losing her eyesight, the ability to swallow, and she’d began having seizures.
Just once, on our first anniversary after our daughter was diagnosed my husband either forgot, or it happened too quickly and he ejaculated into me. I cried. I bawled nearly inconsolably ruining our romantic night. I couldn’t conceive of the idea of my body growing and nurturing another child for whom a medieval fate awaited. “How could you do that to me”, I cried in what still seems an unreasonable fashion. He hadn’t meant to scare me. I knew that. He felt bad. I felt bad. We went back to our method of pulling out and we’ve maintained it ever since. I miss the way we used to make love. I feel robbed of a form of intimacy that we should be able to share freely as husband and wife.
Losing your child takes away so many things. Feelings of comfort, stability, rationale. It’s a struggle to stay present, level-headed, keep moving forward. It feels like we’re winning to have a strong marriage that can survive the nuclear explosion of child loss. It feels like winning every time we make love, even now, fourteen years in to our marriage. Or maybe even more so now because it means we’re carrying on. The idea of pregnancy still terrifies me, us. The heartbreak of losing our daughter still weighs heavily on every aspect of our lives. It presents itself in expected as well as unexpected ways, often at inconvenient times, but we won’t let it keep us apart. Tay-Sachs can’t have everything. It can’t have us, too.
Sex is weightier for us these days. The stakes were heightened by our genetic condition, but our relationship has grown stronger through the trials. When we consider the potential outcome of every time we’re intimate we know there’s a risk, but we take our own precautions to manage them as best we can. Could we take further precautions? Sure, but that’s a road we’re not comfortable going down. I could get my tubes tied, and he could have a vasectomy, but we resist these measures. I can’t stand the idea of our genetic issue taking anything more from us. It should be our decision to take such extreme measures to alter our bodies, and not one forced on us because of our genetic near-incompatibility in procreation. It seems so unnatural to permanently sterilize yourselves just because you love each other.
Now, when we make love, we share a stronger bond, and a silent sorrow.
Becky A Benson lives with her husband and their family in Washington state, works for the National Tay-Sachs and Allied Diseases Association, and is the author of Three Short Years: Life Lessons in the Death of my Child.