What Has Helped Me Accept the Inevitability of My Son's Death

There are times I resent the labels attached to my son: disabled, special needs, developmentally delayed. There are times, however, that I fall back on using these quick phrases to quickly make a point. This is usually when I am frustrated, emotions are running high, and energy is running low. Sometimes what I need to convey in those instances is that my baby boy may not live as long as other children.

During my child’s two and a half year life, and during the months before he was born, the spectre of his death has frequented my thoughts and has been a part of the conversations my wife and I have shared. When we first received confirmation of his diagnosis, a brain condition named semilobar holoprosencephaly, my wife’s doctors let us know if he made it to his birth, he would likely not live through his stay in the NICU.

We struggled to find out information, any information, about our son’s diagnosis and struggled to balance mourning for our son, navigating the medical system, maintaining employment and graduate school, caring for our older (but still toddler-aged daughter), and preparing, hopefully, to bring our child home. My older brother gave me one of the sweetest, most tender and heartbreaking offers I have ever received: he would pay for my child’s funeral if it came to that.

After bringing our son home, I was constantly asked two questions. First, How was he doing? I wasn’t equipped yet to answer that as a father. In my mind the script went something like “Fine I guess? I mean, he’s not sick but he’s missing parts of his brain. So…”
The second question was some variation of: “How long will he live for?” These were well intentioned people who loved us, and we loved them, so my wife and I reserved our comments about how we felt about that question to our private, and often tear-filled, conversations. I had an answer prepared for it, though: “Fifty percent of babies with his condition won’t make it to a year. After that we don’t know.”

My wife would tell people my son had a terminal condition during this time.

“He’s not dying,” I’d tell her, purposely rolling my eyes publicly, “You make it sound like he’s about to go any day.” That sarcasm made myself feel better about what she was saying. But all of the medical professionals around us were agreeing with my wife. By my son’s 1st birthday, however, we both agreed he “wasn’t dying.” Having found a support network of parents and families also impacted by holoprosencephaly, we saw that these children, and their families, could thrive and be happy for decades. I adopted the label “medically fragile” to get across the severity of my son’s conditions.

“Medically complex” has replaced “medically fragile” as the companion label to disabilities. After all, my son has numerous symptoms and many medical specialists who we had to manage, but his immune functioning and overall health was fine. My son isn’t fragile at all.

I still don’t know how to answer the question “how is he doing” to most people except a “he’s doing great!” Sometimes it feels like it masks the work it takes for him to make even small developmental gains or the joy we have in those gains.

Even though “terminally ill” has been replaced by “medically fragile” and then “medically complex,” death is still a part of the background of our lives. Other beautiful children like our son, in families like ours, succumb to sudden onsets of pneumonia, develop life-ending complications from seizures, or even just slip away in the middle of the night without a known cause.

These thoughts used to sneak up on me and leave me feeling debilitated and helpless. After bringing my son home from the hospital I checked on him every morning before I left from work to make sure he was still breathing; to make sure he didn’t leave us in the night. After I forced myself to stop this ritual, the drive to work became very difficult for me. I was alone with my thoughts on my drive, and at least once a week I found myself gasping in my car in the parking lot of the elementary school where I worked, wiping tears from my eyes so I could be ready to go and take care of the children and families who needed me to be emotionally and mentally present.

I’ve gotten to a much healthier emotional place in the last few months. A much healthier place.

First, I stopped pretending I wasn’t devastated by these thoughts. I had tried (poorly) to keep how I felt from my wife, not wanting to burden her with my emotional well-being or bring her down, too. I had to remind myself to share when I was starting to have pervasive thoughts about my son’s end of life with my wife or a few others who “got” what it was like to have this sort of spectre in the home.

Second, my wife and I took the time to set real priorities for our family. What we wanted ourselves, our parenting, and our day-to-day lives to be like now, and in the future. We wrote it down and then made a list of priorities as a couple. What this allowed me to do is to stop avoiding looking at building positive memories, habits, routines and rituals with both of my children because I was afraid of what the future would bring.

Third, I faced the idea of death head-on. These other two steps, paired with over two years of trying to keep the thought of my child’s death out of my mind and failing pretty miserably, let me be open when I stumbled across a youtube channel called “Ask a Mortician” created by Caitlin Doughty. Although morbid at times, I was lured in at first by a few videos sharing frank and fascinating facts about the death care industry. Caitlin’s philosophy of death, however, touched me. It was tender and beautiful, frank and grounded in reality. She advocated for all of us to look at death as a natural but inevitable part of life; that avoiding thinking, talking and planning for death creates more anxiety about its existence and robs us the meaningful final moments we may have with a loved one.

That anxiety has robbed me plenty of moments with my young family already. Learning to face the realities of life, including death, is helping me to live a fuller life.

Somewhere in these past two months, I’ve found the space to forgive myself for two great shames I’ve been holding on to: that I felt so devastated about the potential of my son’s death despite my religious convictions; and that I allowed myself to wish, in a moment that’s stuck in my memory, that he would pass away quickly after being born so we wouldn’t have to experience the pain of getting to know and love him first. Holding on to this shame isn’t helping me be happier, or be better, just like trying to force away the thought of death hasn’t.

My son may well live for another 30 years. I hope he does and more! It is an emotional burden knowing it is likely he won’t. But by learning to accept death and plan for its inevitability I am hoping, and finding, that it helps me to accept my life more, too.

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