Grief & Eugenics: An Ableist Horror Story, Part Nine

Cover art for Grief and Eugenics: An Ableist Horror Story CREDIT: ADAM D. KEARNEY
This installment chronicles the loss of Adam and Jolene’s son and the eventual end of their relationship.

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

Things quieted down and remained that way which meant they could move us into a private delivery room which was close to an operating/delivering room connected to the neonatal intensive care unit (NICU). This was happening and all we could do was buckle up and hope for the best. By this point it was the middle of the night and they told us to try and get some rest when and however we could. Jolene was worn out from everything her body had just gone through and I laid on a couch next to her. The only thing harder than trying to sleep while waiting to be called in for Stuart’s induction was trying to sleep on that couch knowing there was absolutely nothing I could do.

I could go into great detail about everything that happened over the 20-some odd hours between getting to the hospital until active labour started but I am going to keep this next part to the basics. Jolene’s stepmom arrived first and took care of the dog and cat back at home before coming up to see us. When things did start to happen, they happened fast. We were ushered into the OR, and not long after our son Jonas Christopher was born on Oct. 27, 2017. He was quickly whisked off to a waiting team of NICU staff in the connected room. While we waited to hear about his status we loudly blasted “My Name is Jonas” by Weezer a couple of times on my phone.

Navigator. Londons student lifestyles magazine.

Eventually one of the nurses came over to tell us that Jonas was stable enough for the moment and invited me to go in and meet him. I left Jolene for a moment with her stepmother and midwife, grabbing my phone so I could take as many pictures as I could to take back and share with them. He was so tiny, wearing a little toque. His body was covered in sensors with wires and tubes coming and going everywhere. All that mattered in that moment was that my son was alive and I could hold his hand and be with him for that moment. I took it all in. I couldn’t help but feel nostalgic for a second remembering all of the times I had lain under the kinds of bright lights with tubes and wires everywhere as well. An experience we could share. I snapped back into the moment, captured a few pictures, and rushed back to Jolene’s side to share the first pictures of our son. They rushed Jonas off for more tests and observation, but would get back to us as soon as they had news to share.

Unfortunately it took some time for the doctor to make a decision around an issue Jolene was having and we were left waiting in the OR for a while. When they finally made a decision, Jolene’s support team and I were ushered out of the room so they could operate and I found myself back in our private delivery room uncertain about the health of my partner or my son. That soon changed.

A doctor from the team of NICU specialists came in to tell me that Jonas was on life support, that he had sustained multiple injuries during his birth and had substantial internal bleeding and would not survive. I was devastated and was still worried about Jolene. On top of that I now had the impossible task of telling her this news as well. I sat in our room with Jolene’s step mom while our midwife anxiously ran from nurse to nurse asking for updates. Eventually word came that everything was fine and we could go see her. I didn’t know what to say, after everything we had been through together, how was I supposed to completely break her heart.

As I stood beside her bed and took her hand, she opened her eyes and looked directly in mine and in that moment she knew. I tried to find the words to tell her what the doctor had just told me. I took a deep breath, tears running down my face, I shook my head and started “Jonas… he is just too small… there is too much internal…” and that’s when my voice locked up. I couldn’t even form the words, they were there, just in the back of my throat, but my body wouldn’t let me bring them out. I looked at our wonderful midwife and she stepped in as I stood there holding Jolene. Both of us weeping.

Not long after, when they deemed Jolene well enough, we were taken to go be with our son. We took turns holding him. Holding him. Crying in disbelief that this was where we found ourselves. My mother had made it to the airport and was about an hour away riding shotgun as my sister drove down the 401. They both eventually made it to the hospital and got to meet and hold Jonas and to be there with us for some time. It was nice to be together as a family, if only for a moment.

After a while we were alone, just the three of us. To this day when I think about it, I can still feel the weight of him in my arms. We took turns holding him, giving him all of the love we had for him. Letting him know we were there with him. Eventually the time did come where we were faced with making the impossible decision of having to take him off of life support. He died peacefully in his mothers arms while his father held his hand.

When we were released from the hospital the next day, our loving friends and family were there to take us into their arms. Over the next couple of months they were never too far away to be there to be there with us, to lift us up and carry us through some dark days. We laughed, cried and shared wine together. There was even one ridiculous moment where I was in a panic trying to find a freezer on Kijiji to accommodate all of the food we were being given.

A statistic that is rarely talked about is that the rates of separation after a loss like ours are extremely high and that doesn’t factor in our other losses. Just four months after saying goodbye to Jonas our relationship blew up in epic proportions. We tried to do what was popular at the time by trying to consciously uncouple. We started to go to couples counseling to help navigate the complex grief associated with our relationship. It didn't work however, I was soon asking Jolene to stop dragging her feet so we could sign a separation agreement and just be done with it all. It wasn’t until a year later that I found out she had been having an affair with my best friend for over a year before the relationship blew up. What added salt to the wound there was that we often referred to my friend as the “able-bodied version” of me. In the end Jolene had gotten what she wanted and I got out of an ableist relationship. On the bright side, I got to keep Pogue (the dog).

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 handcutcompany.com.

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.