A brief, shining time

One of my sons died of a disease that later became vaccine preventable. But now that and other vaccines have been struck from the recommended list for children.

I never wanted the way my son died to overshadow his life. He’d be 21 now if he’d lived. I wish I could tell you what he’s passionate about, or how he’s doing in college, or what he wants to add to this world – all things I get to know about his brother, who was born after he died.

But the truth is, I have no idea what Phoenix’s story would be today. That’s quite a thing for a mother to say about the child she was once one with, the child who was her world for a brief, shining time.

Phoenix, our firstborn, died of meningococcal disease when he was 7 months old, more than 20 years ago. For a long time, I tried to make sense of it, retracing all the things I’d done to see if I could make them lead to a different world where he could have lived. After all this time, the one thing I know could have saved him was a vaccine that would have prevented him being infected.

At the time he died, there wasn’t one available in the United States – not until later, after it was too late for him. I still remember how my knees went weak and I grabbed the kitchen counter to steady myself the afternoon I read that one was being tested and was close. I was devastated that it hadn’t come in time for my son, but so grateful that other families wouldn’t have to go through what we had. Vaccines had eradicated so many diseases, and finally, maybe meningococcal disease, too.

And now … now we have gone backward in time with Robert F. Kennedy Jr. and the Department of Health and Human Services’ decision to strike some critical vaccines, including those for meningitis, from the list of recommended vaccines for children.

I used to think that people who were opposed to vaccines simply didn’t remember a time before so many deadly diseases had been eradicated. Maybe people didn’t have a lived memory of, say, measles and polio anymore, and if they did, they’d understand vaccines’ importance. I don’t think that anymore. Over the years, vaccines seem to have become less a tool to save lives and more a politically divisive flashpoint with science and statistics ignored.

Phoenix isn’t a symbol; he was a real little boy who is gone. But left behind is his story, and so I’d like to tell it one more time. I know it won’t override any of the anti-vaccine rhetoric, but maybe it can sit alongside it, evidence of the difference between having a vaccine and not. Life and death.

Until the day Phoenix died, he’d never been sick. Not even a cold. He was snuggly and sweet with an easy laugh. How his blue eyes sparkled when I’d put him on a baby swing. He looked at people like he really, really saw them. I got the feeling somehow we’d known each other before. A friend told me that Phoenix was the happiest person he’d ever met. I loved seeing his delight in the new things he discovered – dogs, mashed bananas, books, rain. He had an openness to life, like he was always waiting to see what was next.

But on July 7, 2005, I woke in the pre-dawn hours to him making a sound I hadn’t heard before – it was almost like he was too tired to cry. My husband and I panicked and we took him to the ER. There, he was diagnosed with the flu and we were sent home. I remember telling a neighbor who saw us getting out of the car in front of our house how relieved I was that it wasn’t something more serious. But a few hours later, Phoenix seemed to me more lethargic and I called his pediatrician to see if she could look at him. I expected to be reassured that I was just being a nervous, first-time mom.

In her office, she lifted his shirt and we saw something that hadn’t been there earlier – a mottled rash. She knew. It was a telltale sign for meningitis. She ran with us, out of her office, across the skybridge connecting to the same hospital we’d been at earlier and down the elevator back to the emergency room.

The next few hours were a blur and they are agony to revisit, although I have in my dreams many times. Late that afternoon, his heart stopped. My husband and I took turns holding his hand and I sang to him while doctors tried to bring him back with CPR. He died less than 12 hours after his first symptom.

These are the facts of his death, which I have learned to recount over time. But what it felt like was falling into an abyss of despair where there is no air and no hope and nothing makes sense anymore. For months after he died, I slept with his clothes, had panic attacks and couldn’t start my day unless I picked out what he would have worn that day if he were still alive. Grief has no logic and nothing in the universe feels right when one day, you are a mother cuddling your child and giving him a bath, and the next you are tucking notes into his clothes so the people in the morgue handling his body will know how special and loved he was. It was a long time before I was able to return to the light.

Our youngest son, born a year and a half after Phoenix died, helped bring my husband and I back. Like his brother, he was full of joy. His first word was “Wow”, and he filled my world with wonder, but I battled my terror that something might happen to him too.

I remember the day that he was able to get the vaccine for meningitis that came too late for Phoenix. Watching him get that shot, I knew that the thing that had killed Phoenix would never be able to take him now. It felt almost sacred. Just one injection to save a life — so impossibly simple. And it’s the same for the other vaccines that were removed from the recommended list, for flu, hepatitis, RSV, rotavirus and others.

I know what I have missed over the years since my Phoenix died. I have seen the children in Phoenix’s baby group grow up. And I’ve seen it through my youngest son’s beautiful life. He’s grown up and is in college now and when I see him, I can kiss his cheek, breathe in the smell of his neck, put my head on his shoulder when we watch a movie and feel his hair. I don’t take any of it for granted. He’s an incredible, compassionate man with his own ideas and passions who loves music, creates beautiful art and tries to make the world better. He lights up my world and introduces me to new things. He’s big and strong and watches out for me, always carrying my bags and making sure he’s right next to me if we are out at night. When he was younger, I would sometimes imagine a parallel universe where his big brother was there with him, watching out for him. A world where ours is a family of four, not three. Sometimes I still think about that, but I no longer know how to imagine Phoenix.

The last direct physical tie I have of him is a snippet of his hair, cut by a nurse as I held him in the hours after he died. It’s in a tiny plastic bag, nestled in a box alongside his footprint and handprint taken at the hospital and a card signed by the doctors and nurses there. On rare occasions, I let myself open the bag, carefully so I don’t lose any, slip my finger in and let myself feel his hair again and remember the days when I’d press my face against his sweet head.

As I’m trying to avoid despairing about decisions being made at the government level right now, I’m sitting with those and other memories. He was here for a brief, shining time. And what I can do is share his story.