How My Grief Changed Me Forever: Part 1 of My Spiritual Journey

by Nora F. Murphy Johnson, PhD

In 2008, my two-year-old son, Ayrie, was diagnosed with recurrent respiratory papillomatosis. The disease causes benign cancer-like tumors to grow on the larynx, trachea, or lungs–resulting in noisy breathing, difficulty swallowing, and a quiet, raspy voice. There’s no cure, but the tumors can be removed with repeated surgeries.

Before my son’s diagnosis, I believed following rules led to a life of success and happiness, and that everything could be reduced to black or white, right or wrong, winners or losers. Doors seemed to open for me everywhere I went in work and school. Getting awards, accolades, and promotions was normal for me.

From camp counselor, to high school teacher, to nonprofit manager–I finally found my way to evaluation. Playing and doing well at this game filled me with adrenaline, the buzz of competition, and the thrill of accomplishment.Well… most of the time.

It was only in my most private moments that I admitted to myself that it also left me lonely, fearful that I was an imposter, and not feeling entirely proud of the way I performed my work. And while I never actually articulated them, some questions always tugged at the corners of my mind:

Should we make major decisions about children’s lives by sorted numbers on a spreadsheet?

If we don’t get feedback from the most vulnerable people and the most impacted populations, then how can we understand the consequences of our decisions?

Does what’s currently being mandated and counted deserve most of our attention, or do current mandates reflect easily collected data?

“Women,” the world told me, “shouldn’t be too loud, too opinionated, too aggressive, too boastful.” Being the good rule follower that I was, I pushed these questions to the back of my mind and did what I was told.

But things changed after Ayrie’s diagnosis. Suddenly, my life flipped upside down and for the first time, I had no control. I constantly fought our insurance company. Rules determined which doctors we could see, how many times we could see them, what diagnoses were acceptable, what procedures would be covered, and what medications could be prescribed. When I called insurance agents to advocate for my son, disembodied voices on the other end cared more about following rules than a child’s life. They counted minutes, procedures, and dollars, but not the things that really mattered. They made decisions about my son’s life based on spreadsheets and algorithms. A life.

At this same time, I gave birth to my second son and found myself parenting alone. Many times, people’s blind adherence to the rules made it impossible for me to care for my boys and threatened to push me beyond my breaking point.

Ayrie Mekai Jones Murphy died on September 29th, 2010. He was only four and a half years old.

My heart broke, and the world grew heavy and dark. Nothing made sense. For a long time, I wished that I had died with him. But through the brokenness and darkness, I had to rebuild myself and my family. Shiya, my younger son, needed me, and he needed to grieve for his older brother. And maybe, just maybe, the world needed me, too. (This thought was so scary that it was only an echo of a whisper at the time.)

Something told me that the only way I would be able to pull my way back to life was to live with purpose, passion, and a connection with something larger than myself–all things I had fought, diminished, or denied for the first 36 years of my life. This wasn’t easy, especially because I didn’t know who I was. In my personal life, I tried to become someone smaller by not taking up space or being too emotional. In my professional life, I tried to win the rationality game.

I taught high school math and science, earned a master’s degree in quantitative research methods, and became a kick-ass Microsoft Excel wizard. I loved putting data and emotions in tiny bounded boxes. For most of my life, I had been living by other people’s rules, playing someone else’s game.

I reflected on my parenting. I thought about the trauma my son endured, and the trauma my family endured with him. I thought about all the rules surrounding parenting–how much time kids should spend watching TV, how many vegetables they should eat, how long they should read each day, and on and on. When I sat by Ayrie’s deathbed, none of that mattered. All of those rules were meaningless, and I realized that I could drive myself crazy holding myself accountable trying to follow them. So, I tried to focus on what did matter.

Love

I loved him fiercely. I have no doubt he knew that. Not a day went by when I didn’t hug him tightly and tell him I loved him over and over again.

Value

I valued his imagination, his laugh, his questions, his creativity, and the spark in his eye. I valued what he taught me and the way he cared for his younger brother. I valued him and what he brought to our family and the world.

Walking with

When I could, I kept him safe. But I couldn’t keep him safe from his own rapidly proliferating cells. In the end, the virus won. So I walked with him when he was scared. In the moments before he went under anesthesia, and in the moments when he came back, I know he felt safer because I was there and holding him.

Ayrie knew he was loved, valued, and that I would walk with him when he was scared. That’s all I did that truly mattered. I call this “the deathbed perspective” — the clarity that comes from sitting by a loved one’s deathbed. What matters becomes clear, sometimes painfully so.

Twelve years later, these concepts guide my personal relationships and life:

• Love fiercely, freely, and fully, and be open to receiving love.
• Value myself and others, our unique qualities, gifts, and ways of being.
• Walk with others through their journey, listening and bearing witness.

Every day, I want Shiya (now 15) to know with certainty that he’s loved and valued. I tell him that my heart is always connected to his through love. I value the silliness, empathy, and creativity he brings into our lives. I don’t promise that I can keep him safe, but he knows that I’ll do my best and that I’ll walk with him through life when he’s scared.

Now I’m married to someone I hope to be with for the rest of my life. Sometimes I worry that I drive him crazy with the number of times I tell him I love him. But I don’t want a day to pass where he wonders. I value what he brings to me, my son, our family, and the world.

I used to let logic, spreadsheets, and data make decisions for me. Although I didn’t understand it at the time, it created a deep unhappiness within me. And while I still use those things in my daily and professional life, today it’s also my passions, emotions, intuition, and even my spiritual team that guide me–with Ayrie being at the front of that team. I know now that he’s always with me.

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