There’s a tension that exists around certain memories of Alvin. Tension between periodically seeking out those memories while at the same time pushing them away. Like fingers moving over a bruise, pressing firmly enough against the skin to remind yourself that you can still feel it, but lightly enough to avoid the sharpest edges of pain. These are some of those memories.
The evening of January 3rd, Alvin seemed particularly restless. The past few days he had seemed unhappy, but we had noticed periods like this, without any drastic changes, at various intervals throughout his life. We learned to avoid over-analyzing them, particularly since there was little for us to do in response.
That night Alvin and I were alone in bed together. Cooper was sleeping on the couch in Henry’s room, as we had long ago come to the realization familiar to many parents that occasionally giving up staying in our room together and taking turns sleeping on the couch was better than both of us always stumbling through life on constantly interrupted sleep.
Alvin seldom slept for more than 3 hours at a time, but tonight was different. As the night went on he became increasingly unsettled. He cried out, over and over again, in a raspy voice until he was almost completely hoarse. We had never needed to call hospice before, except for coordinating our scheduled visits, but that is what I should have done that night. Instead, enveloped in the haze of months of lack of sleep, I comforted him as best I could, passing the night with the familiar sense of moving in and out of sleep and wakefulness, never fully inhabiting either. I don’t feel guilt about that night, but I would absolutely change it if I could. In quiet moments since then, I’ve whispered “I’m sorry” many times to him for those hours.
In the morning, Alvin seemed more calm, or at least he was exhausted enough that he was able to sleep a little more. I called his cardiologist’s office as soon as they opened and made a 10 am appointment for that morning. When I brought him in, the cardiologist looked sober. “My guess would be maybe about a week,” he said gently. I don’t remember if I cried or not. There were many times that I cried in those sorts of situations, but many more times when I felt like I should be crying but did not. I left the office and was soon able to get in touch with Ashley, our hospice nurse. All those months of biweekly hospice visits had seemed unnecessary at times, and now, for this one day, they all felt worth it. Ashley made plans to meet me at home to start a morphine dose for the first time and set up Alvin’s oxygen, from the oxygen canisters that had been sitting in our closet, untouched, from the first day that we brought Alvin home from the hospital. I called Cooper to update him. He asked if he should come home early from work, and texted me the same question throughout the day. I kept saying no, thinking that we were about to settle ourselves in for a long, slow week.
After Ashley helped me set up the oxygen and left, Alvin alternated between fighting the nasal cannula and relaxing into well-needed sleep. Henry was away with Cooper’s mom, and I remember the sun through our bedroom window and the quiet sense of relief in the late afternoon as I lay next to Alvin on the bed. In that moment, and in so many others, my emotions were numbed by the fatigue that had soaked into the deepest parts of me. A small part of me wishes I could have felt everything more intensely, while a larger part of me is grateful that I was not able to. I wasn’t acutely aware of every sound of my son’s breathing, every fuzzy hair on his head, the soft skin on his cheeks, but I was there with him, and that has to be enough.
Cooper came home from work a little early, and Cooper’s mom dropped Henry off shortly after that. Alvin continued to sleep, with brief periods of wakefulness in between. I eventually went downstairs and Cooper, Henry, and I ate a quiet dinner together. One of the cruelest parts, for me, of caring for a terminally ill child is that although your heart fights for them always, your body can’t help but savor the peace that is found in moments when they are absent. And then your mind, unbidden, imagines what it would be like without them: a far less complicated life. While your heart knows that life can never be completely satisfying without them.
We put Henry to bed, bringing him into our room to say goodnight to his brother. As Cooper was settling Henry into bed, Alvin was starting to cry in his raspy voice again. Having promised myself to never let him go through another night like the one before, I called hospice right away and they sent out a nurse to assess him and eventually help me give him another morphine dose. The nurse left around 6:00, and Alvin seemed more relaxed after that. I sat and watched him sleep as Cooper joined me in our room.
Sitting on our bed together, we noticed that Alvin’s breathing was becoming more irregular. He would flutter his eyes, waking briefly, and alternating between shorter breaths and deep, intermittent ones. I looked at Cooper. “I don’t know if he’s going to make it through the night,” I said, not believing that I could be saying those words. Cooper didn’t say anything but moved closer to both of us.
Alvin’s breathing continued to change, and for brief periods of time it seemed like he had stopped breathing before he took another deep, ragged breath. I asked Cooper to play some music, and he chose the Pandora Hymns station that we had played in the hospital in the hours right after Alvin was born. Alvin wasn’t fully asleep, and his eyelids would occasionally flutter open, so I repeated quietly over and over “I love you,” hoping he could hear and understand, unsure of what else I could possibly say. I felt both calm and panicked. My son was truly “slipping away” and I could barely grasp the reality of each second before it had passed by me. And then, just a little after 8:00, Alvin took a breath and then did not take anymore. His small, perfect, dear little body was still with us, but we immediately felt that he had left. Cooper and my tears that night were the deepest, most agonized kind. We held Alvin only briefly before wrapping him in his muslin swaddle and putting his knit hat with the bear ears on his head. I loved what was left of him, but I didn’t want to know it without my sweet, shy, feisty boy’s spirit inside. We laid Alvin in the wooden cradle next to our bed. It was a cradle for a newborn, but Alvin stayed so small that it still fit him well as a 10 month old. One of the few things that made it easier for me to let him go was seeing how much he had outgrown that tiny body. It wasn’t enough for him anymore. There was so much Alvin in such a small container.
Then we slept, with the wooden cradle next to our bed. I don’t know how I was able to sleep so well that night. Partly, of course, I had been aching for sleep for months. But more than that, Alvin’s journey with us was finished. There was no more need to give him our absolute best, or at least what we prayed was our best. He was resting after his unforgettable 10 month adventure here on earth. I wish that I could say I had visions of Alvin running and laughing with Jesus. But the reality is that Alvin is so completely absent from anything that I can experience that it is difficult to imagine him fully present anywhere else. The best that I can do is remind myself that I can’t believe I got to be his mother. And that I got to be his mother for longer than anyone could have imagined. And that, despite all my questions and confusion, I do trust the God who said “let the little children come to me” to take care of a certain brown-eyed, fuzzy haired baby.