Since before he was born, we’d done everything we could to give our son a good life. Dad started socking away college savings in a 529 plan before he was even born and I stayed up late researching top preschools. By the time he was 4, I dutifully drove him to piano and swim lessons. When he was 6, I was his soccer coach. That was the age he was diagnosed with leukemia. Suddenly, I was back to researching, sometimes until 4 a.m.
Then he was 8 years old, and to our horror, he was dying. A rare and aggressive form of leukemia had hijacked my son’s bone marrow and had stopped responding to treatment. Chemo and radiation had both failed. Immunotherapy, our last chance, had also failed. His body no longer produced healthy blood. Without white blood cells, he had no immune system. Without red blood cells, adequate oxygen could not reach vital organs. Without platelets, his body could not heal itself; he bruised to the touch, even from something as soft as a feather.
The new topic was top doctors and treatments. We were fortunate to live within a 20-minute drive of one of the best pediatric cancer care centers in the country. So on a Monday afternoon, nearly two years into his treatment, when one of his top doctors turned to me and said that despite the best available therapies and a leading clinical trial, there was nothing more they could do, we were devastated. We had all failed our mission: to give him a good life.
Despite our crushing grief and inability to even breathe, from that moment on, when we learned there was nothing more we could do to give our son a good life, we pivoted and poured our hearts into giving him a good death. What is a good death for an 8-year-old? For our sociable, silly son, it meant being surrounded by friends and family, and having a stupendous celebration of life. He was the youngest of four children and had a sharp sense of both fun and funny. We drew up the idea of a spectacular, circus-themed party.
“When we learned there was nothing more we could do to give our son a good life, we pivoted and poured our hearts into giving him a good death.”
Friends immediately came through on the organizational front, making all the arrangements for getting his peers and ours to the hospital’s peaceful rooftop garden. More people wanted to attend than the garden had capacity for ― the limit was around 125. People planned to come in shifts. Throughout the day I received updates on the volunteers who were arriving ― among them, acrobats, clowns, a magician and a band (made up of elementary school music teachers).
It was slow going getting him up to the garden for the party. I had started early, carefully bathing him with a white cotton hospital issue washcloth. He picked a pair of loose flannel Spider-Man pajamas to wear. With the help of his dad, two friends and a nurse, we lifted him from his bed into a wheelchair. The oxygen line was disconnected from a wall-mounted nozzle and transferred to a gray tank on wheels.
It looked like we were playing a game of Twister as we untangled ourselves from his IV lines that wrapped around everywhere. With pillows flanking him on all sides and a morphine drip on, he was as comfortable as he could be at that point.
None of the guests minded the wait; they all knew why they were there. It was the kids’ chance for one final play date. For nearly two years, our family, friends and community had rallied around, rooting for our son to be cured. They listened with concern when his cancer returned and cried with us as treatments failed one after another. Now everyone knew he was going to die, and soon. All they could do was come together with us, wishing for more time, and, per our son’s wishes, eating chocolate cake.
“I realized early on in my son’s treatment that he needed his friends as much as he needed medicine.”
There was a reason he had such a large circle of friends there on that day. I realized early on in my son’s treatment that he needed his friends as much as he needed medicine. Kids need kids. And as in any relationship, they need honest communication from us and with each other. From that time on, I shared information about his treatments and how he was feeling, and made sure my friends disseminated it to their children.
We scheduled frequent hospital play dates. His friends would check in at the front desk, apply hand sanitizer before entering the room, then sit down for a round of Uno or game of Yahtzee. There were lots of chess matches and even more Mario Kart races on the Nintendo Switch. When our son was too immunosuppressed for visitors, we Skyped with his class for story time and math lessons. A stuffed bear sat in his seat in class to collect his assignments and serve as a reminder that he was still a member of the class. Through FaceTime, our son participated in baseball practice.
Some families turn inward when faced with this type of health crisis. For us, turning outward was critical in helping our son have as normal of a childhood as possible during his illness. We accepted every offer of help. Meals delivered to the door allowed our kids at home to continue to sit down and have dinner together. Friends coordinated carpools, which meant after-school activities were uninterrupted. It was not easy to ask for help. We often felt undeserving. That’s when we put our pride aside and reminded ourselves that it was about offering all our children the best lives possible. The support helped us give everything we had to our acutely sick child.
I shared progress of his disease with our friends and community to keep them involved. If he was asleep, or feeling too sick, when friends showed up, they would go to the Family Lounge and play Xbox. Everyone knew that he might not be well enough for a visit when they arrived. Since communication was forthright, his friends knew to expect changes, like when his hair was gone or when a nasogastric tube appeared. Children handled these shifts for our son better than adults did, in many cases. They moved past the awkwardness matter-of-factly and got down to the important business of playing.
“Turning outward was critical in helping our son have as normal of a childhood as possible during his illness.”
When we finally arrived in the atrium, just outside the hospital’s rooftop garden, our son was ready to be greeted by 100 third graders. They were waiting for us and fully aware that their classmate, reading partner, teammate and friend was dying. As we prepared to roll outside to join them, we heard the band playing Bruno Mars. The smell of piping hot pizza, just delivered, lingered in the air. Before my husband and I pushed our son into the ruckus of the party, we paused.
On the day the medical team informed us there was nothing more they could do, I had to do the second hardest thing I have ever done. I had to go back into his room and tell him he was going to die. Leaning in next to his hospital bed, I said, “I am so sorry to tell you this, but you are going to die.”
“Wait — what? I don’t want to die!”
His soft, bald head and lashless eyelids framed stunned blue eyes. I sunk into them and saw fear. My mind went on a frantic race to find the right words to cradle and calm him. “I am so sorry. I know. But we are all going to die whether we want to or not. I am going to die. Dad is going to die. We are all going to die and we don’t have any control over it. I am so, so sorry.”
“When am I going to die?” he asked. He was, as always, curious and thinking things through.
“I don’t know, but soon.”
The truth is, as I told him that day, we are all going to die. There are no magic words that can catch and carry and keep a loved one from dying. Trying to comfort my child, I scrambled for words. I said, “You will not be alone. You will not feel pain. We will be OK.” This was me doing my best to give him a good death.
“There are no magic words that can catch and carry and keep a loved one from dying.”
Now, as we prepared to head out into the press of the crowd, carefully managing the poles and equipment, I knelt by his side and repeated those three magical phrases and he nodded. He put on a pair of goofy, novelty sunglasses that he loved; they made him look like Mario from Mario Kart. Then, out we rolled into the sunshine and fresh spring air. The crowd cheered and roared his name: “Ewan!”
The hour Ewan spent at the party wasn’t easy; he was exhausted. He had worked so hard just to be able to show up. And yet he was surrounded with love, buoyed up by it. So many friends coming up to him to say, “Hi Ewan,” and “We love you!” and asking to take photos with him. At times, he looked like he was asleep, yet he was very much awake. He had barely eaten all week but surprised us by eating not just one, but two full slices of chocolate cake. By 8-year-old standards it was the benchmark of a good death party.
Three days later, in the early morning hours of May 7, 2018, my son died while holding my hand. That’s when I had to do the first hardest thing I have ever done: leave the hospital without my child. In the year since his heart stopped beating, my own heart has been walloped and belted and beaten down. I have cried every day. The “firsts” without him were excruciating, especially those holidays beloved by kids, like Halloween and Valentine’s Day.
“When you lose a child, you are hollowed; you lose someone and something greater than yourself. You lose a dream — a dream of giving someone a good life.”
The seventh of every month toppled me over. Unexpected reminders, like emails that it’s time for his dental checkup, snuck up on me and pummeled me to the ground sobbing. He was my first thought every morning and my last thought every night. When you lose a child, you are hollowed; you lose someone and something greater than yourself. You lose a dream ― a dream of giving someone a good life.
I spent so much of my time cradling his memory and gazing, gap-mouthed, at the pieces of my broken heart that there was no energy for anything else. I even lived in fear of the pain loosening ― like it would signify that I was drifting farther from him, to a place more alone. To straddle a life lived in fear of pain and in fear of losing pain is exhausting.
I am sinking. Then I remember the three magical phrases, mellifluous and earnest, whispered to my child to comfort him with a good death: “You will not be alone. You will not feel pain. We will be OK.” Saying those words to myself now is like casting out a ring buoy, a lifeline. They keep me connected to him and afloat. They soften the pain. Some days, they even begin to feel true. We might be OK. Not yet, but maybe one day. After all, he’d want nothing more than for us to have a good life.
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