childhood cancer – Pushing Fifty and a Stroller

Not One More Thing

There was a long night while my son was in a coma in the PICU at Children’s Hospital when I couldn’t stop crying. I paced the halls, I stared out the window. I cried. I needed to talk to someone who knew how I felt. I had the phone number of a mom whose son had died from DIPG the year before. I didn’t know her beyond email. She said if I ever needed to talk she’d be there for me. So I called her.

She knew immediately how to talk to me. She said I could ask her anything. My first and only question was why didn’t you kill yourself after your son died? She paused. Said it was a very important question, one she’d given a great deal of thought. She gave me such a simple, personal and honest answer that I’ve replayed it in my mind a thousand times since.

She said DIPG took so much from her family. She reached a point where she wasn’t going to let it take one more thing. Not One More Thing.

I’m thinking about this now because I’m a few days away from the anniversary of my son’s diagnosis. There are a handful of days that are tied for the worst day of my life — my son’s death and burial, but also the day he slipped into a coma and the day he was diagnosed. Diagnosis Day was the day that changed everything. Our life got divided into Before and After. Problems got divided between before and after, the after ones being problems we never thought we’d have to deal with. For us, Christmas is Diagnosis Day, which is particularly horrible for my husband. He used to love Christmas.

The list of things that were taken from our family after my son’s death is unmeasurable. But it has to end somewhere. It ends with Not One More Thing.

Whales and Grief

Even on my best days I feel unsettled and disoriented. When I leave the house I check my purse several times to make sure I have everything — phone, keys, wallet — it’s all there. I go through a mental checklist, but I’m still uneasy. Then it hits me — It’s not something I’m missing, but someone.

I’ve written about how hard this time of year is for me. Seven years ago this month, my oldest son died from brain winged-heart cancer just when he was supposed to go into fifth grade. Each day that passes in August I feel my chest grow tighter and my nerves shorter. I can’t concentrate. I have flashbacks and PTSD. I brace myself for the 24th, and again two days later for when we buried him on the 26th. And then Childhood Cancer Awareness Month starts in September — but let’s be clear — I’m never not aware.

I followed the recent news story of a mother outside of Seattle so consumed by grief she refused to let go of her deceased baby for seventeen days. Medical professionals who observed her behavior said they’d never seen anything like it. They were worried for her health and even her survival. She neglected to eat. Her family never left her side. They tried to help, in fact, relatives took turns holding her baby so she wouldn’t starve or become exhausted. She became exhausted anyway, but still wouldn’t let go.

I understand this momma’s heartache. It doesn’t really matter that she’s a whale and I’m a person. Grief transcends species and manifests similarly among bereaved mothers.

Scientists wonder if the orca, named Tahlequah, actually experienced grief or if we humans projected the emotion onto her. The fancy word for this is anthropomorphism. Well, I’m no scientist but I don’t think I’m projecting. I think it’s arrogant to assume we are the only species capable of primal and even complex emotions. I recognize a sister in bereavement when I see one. I can’t deny Tahlequah the authenticity of her heartache, which was on obvious display for two-and-a-half weeks.

Like Tahlequah, I know what it’s like to not let go. I held onto my son for ninety-six days while he lay in a coma in the PICU at Children’s Hospital. At first he was minimally responsive to my voice and touch — his increased heart rate was his response. I passed long hours each day holding him and whispering I love you in his ear. Summer progressed and the tumor snaked throughout his brain, and eventually his vitals stopped indicating if he knew I was there. Still, I held him. I knew he would die when the cancer finally touched the part of his brain that controlled his heartbeat.

One morning in late August, a concerned social worker gently asked my husband and me why we thought our son was still here when he should have died months ago. I said, “For the love.” My words hung in the air when his heart rate monitor went silent and his lips turned gray.

I told my best friend I would have held him for another ninety-six days if I had the chance. She said, who are you kidding you would have done it forever.

It’s torture to never hug, kiss, touch, tickle or hold hands with my son again. No more wiped tears, kissed boo-boos, or counted freckles. High-fives, winks and pats on the back are gone. I can never crack his toes. His voice and (oh, god) his laugh — what can I say…

Some people might say I’m anthropomorphizing to think Tahlequah knew what she would lose when she finally let go of her baby, but I know there’s no other explanation to hold on like she did. It is a desperate and crazed way to prolong the inevitable — the real hell — that begins the next morning when you wake up without them.

It is now seven years after the first morning I woke up without him. I’m afraid still when I cry it will be impossible to stop. There’s a scientific myth that the cells in our bodies replace themselves every seven years, essentially making us different people from whom we were before. Except for neurons in the brain. Those don’t change. Those will hold my memories of my baby forever.

The Pineapple Tree

UPDATE 2/4/19: I received a text that they found the plaque (I don’t know where). It will be placed in the garden next to my son’s pineapple tree.

There’s a fat, squat palm tree that looks like a giant pineapple in the courtyard of the elementary school that my oldest son attended for most of his short life. He loved that tree. He ran endless laps around it to burn off his exuberant energy. He climbed up the knotty pieces that jutted out from its sides until a teacher chased him down. He balance walked all over the display of rocks set around the tree, and sometimes he simply stood beneath it and stared up at its miraculous starburst formation and let the golden sun shoot through the empty spaces and illuminate his curious face.

People took note of how much he loved that tree and started calling it “Mason’s tree.” Kids told each other to meet at “Mason’s tree” to play tag, and of course my son would play too. When we moved away I wondered if they’d still call the tree by his name. A few months after we moved, my son was diagnosed with incurable brain cancer. We received a lot of support from my son’s teachers at his old school — Mason had the gift of charm and was easy to fall in love with and hard to forget.

After he passed away I ordered a memorial plaque and the aide from his kindergarten class oversaw its installation. I was sent pictures from thousands of miles away. I’m told my son’s friends arranged rocks around the base of the stake for decoration and protection. I was deeply touched by everyone’s expression of love for my son.

Those friends moved on to Junior High and then High School. The kindergarten aide retired. After a while, only three of his teachers remained. The school changed Principals. The building underwent improvements. Years went by before I returned for a visit, and when I did I dropped by to finally see the plaque.

But it was gone.

It was after school when I snuck onto campus and the office was closed. I called the next day and left a detailed message for the Principal. She didn’t return my call. I called and spoke to the office secretary again. The Principal again didn’t return my call. Finally, she told me she’s never seen the plaque and never heard of my son. She’d ask around, but it’s likely gone.

One time when I was in the fifth grade the boy who lived across the street punched me in the stomach and literally knocked the breath out of me, so I know what it feels like to not be able to breath. The feeling I had when I hung up the phone was similar — fast, shocking and unexpected — my breath was gone.

Nobody wants their child forgotten. Nobody wants the memory of their child disrespected, especially in a place that gave him so much pleasure. My son was a friend to everyone who met him. He loved his school and felt love from his teachers.

I needed to find out what happened.

I flew home and waited. A month later I sent an e-mail. Finally seven days later (after a follow-up asking if she received my e-mail) the Principal finally responded. She said she asked around and nobody knows what happened. Sorry, she said, she tried her best. I got the feeling she wanted me and the whole uncomfortable and inconvenient business about a plaque for a dead child she never knew to simply go away.

But I wasn’t going to go away.

I followed up and urged her to look in closets, boxes, cabinets, everywhere. I figured someone wrapped it up and put it somewhere during the improvements, and with all the staff changes it simply got misplaced. I figured it was somewhere and it could be found if someone looked for it. If I lived closer than 2,000 miles I’d do it myself. I offered to send friends to look, but she didn’t want that.

She did everything she could, she said. I told her — I understand it didn’t go missing on her watch, but it’s kinda her watch now and it falls to her to find it. She said she didn’t see it that way.

I get it that after my son died the world had the audacity to keep spinning. I get it that nobody probably meant to throw away a memorial plaque for my dead son. It’s likely missing because of thoughtlessness. But it’s a thoughtlessness that feels cruel.

If I close my eyes I can see my son’s pineapple tree. It was our meeting spot at the end of the school day. I’d park down the block and walk over to look for his shiny dark hair among the blush of boys, and finally spot him dancing and running around the giant base of his tree. I’d catch his bluish-greenish eyes that changed color depending on the color shirt he wore. My heart skipped a beat every time.