Those who know about Caemon often know of his many little quirks. They know he liked to wear scrubs like his nurses, that he loved to read, that he spoke like a much more mature child, and that he loved appliances. Early on after his diagnosis, I put together a poster board full of photos of his favorite appliances. People sent in pictures of theirs to cheer him up. Caemon loved all kinds of appliances from coffee grinders and stand mixers to vacuum cleaners and air pumps. But he loved them in unconventional ways in that he took care of them, nurtured them. Once, we left Caemon with a favorite babysitter, and when we came home, they had put the vacuum cleaner down for a nap, complete with a blanket. Another time, I lifted the cover of my sewing machine to find a bowl of salad Caemon had made for it out of his wooden play food. His toy coffee maker was often swaddled in blankets and snuggled to sleep. The air pump was slow danced and spoken to with the most soothing of voices.
But Caemon’s love of appliances did not come easily. In fact, this was a love that stemmed from a very grave fear of these often noisy, seemingly unpredictable machines. When we ran the vacuum cleaner, Caemon would cry. He would run to his room. He would beg for us to hold him, and he would tremble until it was turned off. The sewing machine, the paper shredder, all of these things made such terrible noises to him that he would cling to me or to Jodi while we used them, begging us to stop. Of course, we worked with him on all of these fears. He had a “special vacuum hat” that covered his ears and protected him from the vacuum cleaner. He got to sit and watch how these machines worked when they weren’t plugged in, and as time went by, Caemon grew interested in them. Like so many children, his curiosity won over, and he couldn’t help but wonder what would happen if he got to press the buttons and make the machines whirl. Mostly, he still preferred them off, but gradually, Caemon grew to love his appliance friends, giving them names like “Big Vacuum” and “Red Tool,” and that nurturing, loving spirit took hold.
Before long, Caemon was using the vacuum cleaner himself. He would don his special vacuum hat and work away at the living room. He would insist on helping us grind coffee in the morning. He wanted to be up on his stool as soon as the Cuisinart or the stand mixer came out. These dreaded machines had become his friends, and in learning to love them, he learned to fear them less.
To our surprise, this same strategy translated to Caemon’s time in the hospital. Prior to his hospitalization, Caemon was terrified of visiting the doctor’s office. He would begin crying the moment we entered the parking garage, and he wouldn’t stop until his doctor came in and began examining him. It’s not much of a surprise that this was when the tools like the otoscope and the stethoscope made their debuts. As soon as he could turn a light on and off and have a little control, he was ready to engage, but he still was fraught with terror each time we went back.
When he entered the hospital, he was so sick that his fear was a little less noticeable. Perhaps that Jodi and I were consumed with our own dread made his seem somehow lessened. But when Caemon started to feel a little better, he began to see that his surroundings were something to befriend. He became interested fairly quickly in the fancy thermometer they used to take his temperature every four hours. The blood pressure machine beeped and had interesting parts. His IV pole had lights and buttons and tubes. Soon, the machines in his hospital rooms were starting to come alive much as his home appliances had.
Caemon named his IV pole “Beeper.” He would give bandaids to his medication pumps and to his thermometer. Any machine that spent any time in Caemon’s room was covered in evidence of his nurturing, and he continued to befriend the various “appliances” he encountered throughout his treatment. He fell in love with his nurses, even though they often had unpleasant tasks like dressing changes and medications to impose upon him. He loved the ultrasound machine so much that he couldn’t sleep if he knew it was coming. This strategy helped Caemon through each step of his treatment, and what would be traumatic for most well-equipped adults was something Caemon could manage because he led with love.
At his funeral, more than one person spoke of Caemon’s uncanny ability to befriend his fears. His grandmother told the story of his fear of her wall furnace and how quickly he named the furnace “Homer” and would speak of Homer like an old family friend. Grandma and Grandpa’s house became Homer’s house. In her story, she showed just how much Caemon wanted to love his surroundings, just how important it was to him to overcome his fears, and he did. I wrote of the same lessons. One of his nurses did too. This remarkable boy had shown us that we needed to lead with love and not with fear.
During Caemon’s treatment, we learned so profoundly that our love for our son trumped all fear, that for him we would do anything regardless of how intimidating it might be. In the first few days after his diagnosis, when Caemon had to spend time in the PICU, it meant finding strength in our love for our son when the thought of the ICU was nothing but horrifying. When it meant we needed to face unsettling news of test results, it meant our love for our son had to buoy us enough to get through the news, no matter how bad it might be. And when it meant that his body had finished working, that life-saving efforts were not helping, we had to face the greatest fear of all and say the words to let him go because we loved him far too much to try to keep him here when his soul had already gone. As mothers, there was nothing to do but lead with the massive love we had for our son; to give into fear was not an option, even though we lived in terror with every breath we took.
For me, this has become a motto to live by. As a person who has struggled with life-long anxiety, I have almost always led with fear–fear of failure, fear of dying, fear of losing those I love. But I have learned that regardless of one’s fear, life is going to take its course. I have learned from my son that leading with love and even a sense of curiosity can make the fear dissolve bit by bit. It works in big ways and little ways in my life. I am not comfortable with flying, so now, when I board a plane, I pat it on its fuselage and say, “Hi Airplane!” and focus instead on how important it is for me to go new places to honor myself. When I am faced with panic attacks, I go to self love and take a walk or meditate, and in doing so, I live with less anxiety overall. And the bigger fears, they deserve to be met with love too. When faced with whether or not we would try to have another child after Caemon died, the fear of trying again, of having another child who could get sick, of falling in love with a child again was overwhelming, but the love for our son, the love for the future family we were imagining was so much more powerful when I let that lead. And even after last year’s miscarriage, I continue to let love lead as we try again.
We learned after Caemon’s memorial service that more than one person had carried this message away, and for some it was life-changing. The partner of one of Caemon’s caretakers heard this message and had a caiman tattooed on his forearm to remind him to lead with love to overcome fear. People write to us to tell us how they are leading with love in their own lives–in their work, their parenting, their everyday lives–and each time, we see how our son’s life lesson lives on in others.
It’s so simple, so profound, so life-altering, this message from our sweet and oh-so-wise little boy. It is a lesson he demonstrated so beautifully for all willing to see it. It is a gift I will carry with me for the rest of my life.