Grief & Eugenics: An Ableist Horror Story, Part Eight

Cover art for Grief & Eugenics: An Ableist Horror Story CREDIT: ADAM D. KEARNEY
This installment further chronicles Adam and Jolene’s relationship and their struggles to have a baby.

This article is Part Eight in a series of excerpts from Fanshawe grad Adam D. Kearney’s essay, Grief & Eugenics: An Ableist Horror Story.

When I got home we embraced in excitement but as I sat down I knew what I wanted to do. I didn’t want to go through the testing, the waiting, the anxiety and fear, or any of it. I would have preferred skipping all of that and terminating the pregnancy as early as possible. I had convinced myself that I was an unlucky person, and there was no way that this would turn out well. However, I didn’t express this, as it wasn’t my choice to make. I expressed my concerns, and asked Jolene what she wanted to do next.

She suggested rather than get emotionally invested, we should not tell anyone that we didn’t absolutely have to tell. When the time came to make a decision if the results were the same as with Stuart, we had the option of a D&C (Dilation and curettage, a procedure to remove tissue from inside of a uterus). We wouldn’t be able to meet our child but we wouldn’t have to traumatize ourselves all over again. This is what she wanted and I was behind her to support her every step of the way.

Navigator. Londons student lifestyles magazine.

To say it felt weird to keep all of this a secret from friends and family would be an understatement. All that I could do was hope that the odds were in our favour this time. It was a 50/50 chance with Stuart, what are the odds we would end up in the same spot again? Well, if you ask a fifth grade math teacher they can tell you, the odds are still 50/50, nothing changes. Unless you have good luck, which I don’t. Again we went through the anxiety of getting the testing done and hoping Jolene wouldn’t miscarry. Again, I waited by my phone for the result. Again, I hit the end call button with tears streaming down my face.

This time around we handled it so medically, so detached and most of all so cold. We had the appointment booked and I wanted to say, “wait, but what if we didn’t do this…” Instead I packed my laptop so I could get some work done while I was waiting for Jolene to finish her appointment. On Nov. 16, 2016 we named our son Everett Moon. After losing Stuart I had introduced Jolene to one of my favourite sad bastard bands the EELS, fronted by Mark Everett. They sing hauntingly sad songs in a way that makes you feel like everything is going to be alright. As well, after Stuart I had gotten a waning moon tattooed on my bicep, Jolene thought it seemed an appropriate addition to his name and I didn’t disagree.

These decisions weighed heavily on me. I felt as though I hadn’t prepared myself properly for the situation at all. I now understand what effect disassociation from the disability community had. In an effort to be seen as more than my disability, I grew to increasingly hate all aspects of it. I felt like it had brought only pain, misery and grief into my life and that I would do anything to spare my future child the same. I didn’t realize that by making these decisions I was further lowering my own self worth. If I thought that embryos who would have disability like me could be not viable, then why did I think my life was? With each loss, a part of me died. Though at the time I didn’t have the vocabulary, or know the history behind it, I was playing an active role in Eugenics myself. I had bought the lie of the inferiority of life with disability, and could feel the blood on my hands.

A couple of weeks after saying goodbye to Everett, Jolene left for a trip to Paris. Something she had planned shortly after finding out about the pregnancy. I couldn’t join her because I had used up all of my holidays at work for appointments for IVF and Everett. I was jealous and lost in a lot of my own emotions. I felt extremely alone. I was dealing with a lot of self-hatred and feeling like life was just unfair. I had put myself in this place, I should have left the relationship when I had to compromise myself to stay in it. I shouldn’t have allowed myself to gamble with the odds of genetic inheritance like I had. I found myself beginning an inappropriate text based relationship with someone I knew. I was looking for a connection and I found it. It didn’t end up lasting long, and never evolved into anything physical. Because it was only through a screen it didn’t seem like it was “real,” but it was real enough.

Jolene came back with all sorts of worldly stories and gifts. Meanwhile, I was still burdened with guilt, shame and jealousy. I tried my best to move beyond it and start to build back to a point where we could think about next steps on our journey to starting our family. We had some appointments with the same counselor we had after Stuart, which helped. The recurring encouragement was to keep on our journey and that maybe by having a child we could begin to truly heal. So that’s what we did. Jolene would dip into some of her savings, and I was fortunate enough to have my parents offer to help significantly with the cost of trying IVF again.

We found ourselves getting off the elevator and into the same fertility office in Toronto a year after our last failed attempt. This time however things were different. Did we actually stumble upon a bit of good luck? After enduring the same torturous routine Jolene went through previously this time we had three viable (shudder) embryos. This time the first one took and we were again off to the races. This time we didn’t have to worry about the increased chances of miscarriage that the prenatal testing brought. We didn’t have to worry about waiting for test results to start telling our close friends either. I even went all out making a social media announcement post. A record is spinning on a turntable, but the sound of the Doppler heart beat is playing instead of music, and then the words “RELEASE DATE” with the due date comes up on the screen. Then the piece de resistance: as the album stopped spinning, the middle of the record was the ultrasound picture. Everyone we knew were just as excited as we were.

I started taking pictures every week of Jolene’s belly as it grew so I could stitch them together into a cute little video when we got to finally meet our little person. We started the process of changing our spare room into a nursery. We met with one of Jolene’s coworker’s partner’s who volunteered to help modify their old crib to make it more accessible for me. This was finally really happening. It felt real.

At just shy of 23 weeks, Jolene had been having some slight hip/back aches for a little while and went to a naturopath that someone had recommended. She was hoping to see if there were any stretches or anything to help relieve what she was feeling. She assured me it was nothing major. She had a small adjustment done and afterwards found it helpful. We went on about our business as usual.

A couple of days later Jolene wasn’t feeling the best and decided she was going to take a bath. About a half an hour after she disappeared into the bathroom she called for me. I thought maybe she wanted me to bring some water or tea, but when I entered the bathroom I knew right away something wasn’t right. You know that look people give you when you can tell they are trying to keep their composure so you don’t lose yours? That was in full effect. She told me that she was pretty sure she had started to have contractions, and the midwife had suggested we go into the hospital to get things checked out. We just lived a short five minute door-to-door drive away so off we went.

I had an awful feeling as we entered the hospital. Flashbacks of going down the same hallways that led us to saying goodbye first to Stuart and then Everett. They rushed us into a private room and the staff quickly began triaging the situation. It felt like an eternity but was likely less than an hour before we knew for sure that Jolene was definitely in labour. So many things happened so fast. First they tried to stop/stall the labour with drugs and while that was taking effect they tackled the next issue. The baby was facing the wrong way so they then rushed us into an operating room. A doctor with support of a nursing team was able to successfully turn our little person around–a feat I was told was extremely hard to pull off. The next urgent matter was getting a drug into the baby’s system to help prepare their lungs to get to work early. As the drugs to stall the labour took hold, Jolene was going to try and rest a little, which left me call our families.

The first thing I did when I left the OR was completely break down and start bawling. Our midwife did an excellent job of consoling me and talking me down to where I could actually talk again. She shuffled me off into a room which wasn’t being used where I could privately break down repeatedly while I called our families. I called Jolene’s parents first and before I was even off the call her Stepmother was on the way. My next call was to my folks, who were already in Florida for the winter. Without hesitation my mother was booked on the next plane back. My dad had to stay back and wait for a new trailer to be delivered the next day. After I hung up my phone I took the biggest breath in and slowly exhaled to collect my wits to go back into the OR to rejoin Jolene.

To be continued…

This memoir essay was published as a zine in Jan. 2023. If you enjoy it and feel you would like to support the author, you can find a pay what you can PDF or purchase a physical copy at

Editorial opinions or comments expressed in this online edition of Interrobang newspaper reflect the views of the writer and are not those of the Interrobang or the Fanshawe Student Union. The Interrobang is published weekly by the Fanshawe Student Union at 1001 Fanshawe College Blvd., P.O. Box 7005, London, Ontario, N5Y 5R6 and distributed through the Fanshawe College community. Letters to the editor are welcome. All letters are subject to editing and should be emailed. All letters must be accompanied by contact information. Letters can also be submitted online by clicking here.