how little i know

The last installment in Jodi’s series:

There are many ways to know something, depending on how loose one’s definition of “knowing” is. My mom, for example, had a feeling that I was gay, but she had no way of proving it without my confirmation. Scientists require empirical evidence or proof that something is so. To the pediatrician who finally took the time to examine Caemon, feel his enlarged liver and spleen and order a CBC, this chain of evidence gathering lead to the moment when her hypothesis was confirmed by a pediatric oncology fellow. Our son’s leukemia was no mistake. It was a reality, the “new normal.”

I knew Caemon was very sick, but I knew absolutely nothing about leukemia. I had no idea what it was, so when I walked off the elevator at the hospital for the first time and saw the “Pediatric Oncology and Bone Marrow Transplant Unit” sign, I was viscerally rocked. I did not yet know what leukemia would do to my son, but I knew cancer. My mother had died of cancer; both of my grandparents had been diagnosed with terminal cancer. I was intimately familiar with cancer and its cruelty. But its casualties were old, and in the case with my mother, she smoked heavily for many decades. She courted cancer; what had Caemon done? Two of the most difficult words to see next to each other are child and cancer; it’s sheer terror when referring to one’s own child. It’s unimaginable, incredibly surreal, and hands-down the last place in the world any parent wants to see their children.

We were torpedoed down a rabbit hole of treatments and procedures, relinquishing all control of our son to strangers who were the only ones who might save him, and I, for one, knew that they would. My knowing was such: it didn’t matter how severe his disease was because he would survive it. The Marston-Simmons family was strong enough, had enough love and fortitude to withstand anything, and we had the best medical care we could hope for. Team Caemon was strictly A-list—true believers only—and anyone who wasn’t on board with that could stay away (and some did).

When I spoke to his oncologist on the phone after his death, she asked me somewhat incredulously “Didn’t you know that last week that he was dying?” She was speaking as a scientist and doctor, and from that vantage point, when looking at his non-existent platelets and his white counts, and his x-rays, she knew he was dying, but me?

“No, I’m just a mother who was trying to save her boy,” I replied. Truthfully, I don’t know what it looks like when someone is dying, and yes, I had heard her say that he would likely die, but I also heard her say that they had a few cards left to play, and so I clung to those words, trusted in the “plan,” and dug in.

In retrospect, my “knowing” was based not on mother’s intuition or empirical data (we avoided all studies and statistics on JMML), but on something more like desperation or self-preservation; nevertheless it was as potent as any certainty belonging to those devout believers of the divine. I didn’t believe in miracles, but Caemon would prove to be the exception; he would amaze people and recover. That’s what I “knew” all the way up until the moment he died. You can imagine, then, that the ensuing shock and disbelief I felt resembled a religious zealot waking up the morning after the supposed rapture realizing he’s been wrong and that his whole philosophy/belief/dogma/whatever is completely bankrupt.

In that absence of certainty that I now find myself, I realize how little I actually know. I have spent years in academia, trading in facts and evidence, but they bear little use in my current life. The fact is that Caemon is dead, and nothing that I did or did not know, believe or not believe, trust or not, makes any difference, at least not in the outcome. As many have reminded me, however, it did make all the difference when I walked into my son’s hospital room. I may never know why he had to be taken so young or how Timaree and I will endure without him–only that we must.

And so the journey continues.

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6 thoughts on “how little i know

  1. Carol Mattson Richardson

    Dear Jodi, I can’t say I enjoy your posts because they are painful. But I look forward to hearing from you because your words resonate so strongly and are true to the core. What else could you do but believe that Caemon would survive and life with him would continue? You were there all of those last days, never leaving Caemon alone for a moment if you could help it. You did everything humanly possible for him. If the doctors had looked you in the eye and said, “Enough, We cannot cure Caemon and we can’t keep him alive much longer, so just hold your boy and love him for the time that is left” you would have done that. However, our medical teams are geared to treat, to cure if possible, but treat to the end. A parent fighting for her/his child’s life only hears the hope that goes with “a few more cards to play”. I don’t pass judgement on the actions of Caemon’s doctors, it’s what they are taught to do and Caemon’s team did it really well. If any humans could have pulled off a cure, I believe it would have been Caemon’s team.
    I prayed with all my heart, every day that last week, that the leukemia would be miraculously beaten. I never let myself give up that hope. I don’t even know you or Caemon, and still I was deeply entrenched in the battle for Caemon’s life. How could you and Timaree, as his mothers, believe in anything less than a final hour reprieve?
    I still think about you both, every day. Your candle stays lit and the little agates I carry for you and Timaree are worn smooth and polished with handling as I remember you, and worry a little, and continue to pray for you both.

    Reply
  2. alwaysmy3boys

    I felt the same way during my son’s short life. From the moment he was born I was convinced he was going to be ok. He would heal, he would get better, he would be ok. He would overcome something no one else could because he is MY child.

    Reply
  3. triciabertram

    Because all I have to offer are my words and my loving empathy.

    ONE YEAR ON

    death is a howling, icy wind
    indiscriminately snapping saplings
    felling mighty gum trees
    freezing buds before they can bloom

    grief isn’t all stoicism
    and
    ‘they’ve gone to a better place’
    ‘let them go’
    ‘only the good die young’
    ‘they’re with you in spirit’
    ‘move on with your life’

    grief is a wounded puppy
    whimpering in the night
    a searing blow torch
    burning
    branding

    grief is the glacial wind of death
    keening
    slicing through outer layers
    freezing soft flesh in mid stride

    grief is the breath taking memory
    of sparkling eyes
    a gentle smile
    the scent of a hug

    grief is a question
    will spring come again?

    Tricia

    Reply
  4. boringyear

    I think the only way anyone can survive battling cancer, especially in their child, is to have that unwavering sense of knowing that everything will be OK. Even with that faith it is an extraordinarily tough road. Having faith gives us strength.

    The two of you are so amazingly strong. I don’t know you but I think of you every day and wish for you whatever peace you can find in this world.

    Reply
  5. Bree Davidson

    Moms. I wish there were some way to fix this. It tears at my heart knowing what your family had to go through.

    When you followed your instinct to avoid researching JMML and its horribleness, you made the BEST decision with what you knew at the time. Because you didn’t know the scary numbers, you had space to believe in miracles.

    Your “knowing” that he would defy the odds meant that you projected genuine hope when you were with him. That is just what a small boy needs – parents who believe in his ability to thrive.

    Reply
  6. It Is What It Is

    I came here by way of happy-go-lucky’s blog and have spent an hour reading back through your posts about mothering your beloved Caemon. As a mother to two sons, 6 and 3 1/2 months, I am gutted for you. You have lived the nightmare that all mothers pray to keep at bay and you did so with such honor, grace, and love for your sweet boy. It is all anyone could ask of any of us facing a similar tragic end to the light in our life.

    Just being with your words, your memories and reflections and rawness has changed me. I will think of your boy as I mother my own.

    I am so deeply sorry for your loss. There are no words. I hope his light shines through in your lives in ways that remind you of the goodness of the world.

    Reply

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