Ben shared his story in April of 2022.
Being a parent of a terminally ill child means having to face the fact that the only person who knows what your child is going through is your child. We don’t know their pain. We don’t know their level of sickness like they do.
When Kylie’s ALS started progressing more quickly, around October 2021, she asked me if I would watch a movie with her in bed. I said, “Sure, what movie are we going to watch?” It was a documentary about the Death with Dignity Act in Oregon. When it ended, she asked me, “Mom, do you understand why I want to do that?” And I said, “I do, and I would do it for myself if I had ALS. But having my child wanting to do it is so different.”
As time went on, as she got sicker, I started to see things differently. I had to trust that if she believed this was an important option for her to have, I should too.
Kylie was the baby of our family. At 25 years old, she was outgoing, funny, a ray-of-sunshine personality; I’ve looked, and I can’t find a picture of her not smiling. One of her biggest concerns was making sure everyone else around her was happy. If she sensed that someone was sad or struggling, she would go up to them and say, “Do you need a hug?” It was practically her motto.
Up until 2019, she was very active, and loved working out and going hiking. Her real passion, though, was doing hair and makeup. She was in the process of looking into enrolling in cosmetology school when she started feeling a strange pain in her left ankle.
For nearly a year, we didn’t know what was going on. She went to multiple specialists, underwent so many tests — MRIs, spinal taps, muscle and nerve biopsies, IV treatments in case it was an autoimmune disorder. All this time her disease was progressing. By the time we went to the Mayo Clinic in Arizona, her whole left leg was compromised, and she could no longer lift it to move it. She had lost 20 pounds in a month and a half.
At Mayo, they rolled out a few more tests. On May 14, 2020, they came to the conclusion that the only diagnosis left was ALS. It was a total shock for all of us.
Even before she received her ALS diagnosis, Kylie had been a big supporter of medical aid in dying for terminally ill people. To be honest, I didn’t really know much about it until she educated me on how it worked and why it was important for the person who was ill. Then, when she found out she had ALS, she told me, “There’s going to be a point when I want to use medical aid in dying.”
I saw Utah didn’t have this option, and I told her, “I feel like we’ll be able to take care of you to the very end.” And she said, “No, this ALS is going to deteriorate me. I don’t want to be in pain. I don’t want to get to the point where I can’t do anything on my own.” I said, “What if we can manage it with medication?” She said, “I bet you we will get to the point where we can’t.” She had researched so much about ALS. Most people suffer tremendously with it. They die by suffocation. “I don’t want to die like that,” she said.
At the time, I couldn’t wrap my head around my child choosing medical aid in dying. I thought, I’ll just do what I need to do to take care of her.
For about six months, we saw many neurologists, but there was nothing they could do. Kylie would leave every appointment crying and upset. So we started seeing a palliative care doctor instead, which was much better. Kylie’s ALS was progressing so quickly, her needs were constantly changing. She was in a wheelchair, unable to lift either of her legs, and then she started feeling weakness in her core and could no longer sit up like she could before. About seven months after her diagnosis, she started feeling weakness in her arms and hands. Soon she could no longer hold a hairbrush or toothbrush.
Losing her ability to brush her own teeth or comb her hair, or turn over by herself in bed, or even lift a glass to have a drink of water, caused Kylie a lot of anxiety and panic. It was devastating for her when she could no longer do her hair or makeup, which had always brought her so much joy. She felt stuck in her body, and she hated feeling like that.
By October 2021, the palliative care doctor was having a hard time keeping up with Kylie’s progression. That’s when we turned to hospice. Toward the end, hospice was coming twice a week, but every other day we were having to adjust Kylie’s meds to keep her comfortable. She was in so much pain, but there was only so much medication the doctors could prescribe. It was a constant battle.
Kylie again brought up medical aid in dying, asking about the feasibility of going to Oregon or Colorado to access their aid-in-dying laws. I remember this moment, sitting with her in her bed, because it was when I finally got it. I thought, I hope she doesn’t have to do this. But I want her to have the choice.
I started researching and realized that Colorado would be a better option for us. We leased a cottage, fulfilled all our appointments and completed all the necessary paperwork so that Kylie qualified.
Getting her prescription for aid-in-dying medication was a game changer for her; just knowing she had it gave her comfort and relieved her anxiety. Before she had the prescription, she was constantly worried: “What if my arms go instantly? What if I can’t breathe tomorrow?” After she got it, she could finally just live in the moment.
Over Thanksgiving and Christmas we tried to make memories with as many of Kylie’s loved ones as possible, and we had a celebration of life for her with family and friends back in Salt Lake City. Kylie had originally planned that January 26 would be her last day, but the week before, she said, “Mom, I can’t wait that long. We need to move the date up.” She was deteriorating quickly, and was very weak and tired.
On January 20, 2022, our family, including Kylie’s brothers, sisters, nieces and nephews, all came to be with her, as well as some close friends. She was so at peace. Of course, true to form, she wanted to make sure I was okay before she took the medication. “Mom, did we do everything that you wanted to do together? Was there anything we didn’t do that you wanted to?” No, I told her, there wasn’t. She was at peace, and so was I.
Having seen how much pain my daughter was in, I have no regrets about her decision. The regret I do have is that we had to move to Colorado to access this option. Making the move was financially, emotionally and physically difficult. It took an incredible amount of energy for Kylie. If medical aid in dying were available in Utah, she could have spent that energy and strength on visiting with family and friends. She could have passed away in her own home, in her own room, with all of her stuff that meant something to her. It would have been a huge burden lifted off her.
For me, the move took away time I could have been spending with my daughter. The time it took to find a place to rent, to go over and check it out, to bring her stuff over — I could have been spending that time creating more memories with Kylie.
I wasn’t really a supporter of medical aid in dying until my daughter got sick. Now I strongly believe that people with a terminal illness should have this option. Kylie suffered so horribly in her last months that even hospice could not contain her pain or her symptoms. I implore Utah legislators to be open, to give people like Kylie a choice. For the dying person, if it’s too much, if it’s too painful, they should have the choice to say, “I’m done.” I want to keep my promise to my daughter to get her story out there, and to get our home state to let people have this choice.