In 2009, Merri’s firstborn son, Josiah, was diagnosed with a glioma astrocytoma, a type of brain cancer, and began treatment at St. Jude. He was 6 months old. A decade later, Merri helps other parents through the St. Jude Parent Mentor Program, where she forges a special connection with new St. Jude families, helping them grow accustomed to their new way of life. Here, Merri shares the sorrows and joys — and bittersweet milestones — of raising her child after cancer.
Josiah had just gotten cleaned up and his hair needed drying. As his fluffy hair blew every which way under the blow dryer those scars peeked out of his hair then disappeared under the deep brown locks. Again and again they seemed to tease me.
With my fingers I slowly traced the biggest scar on the top of his head. I was taken back to those long days of appointments with our 6 month old son, who was being treated for a glioma astrocytoma brain tumor at St. Jude Children’s Research Hospital. As I touched his head, it took me back in time.
While we waited for E Clinic I had traced them.
While we waited for chemo meds I had traced them.
While we waited for MRI results I had traced them.
While we waited for tomorrow to come I had traced them.
The surge of old memories and new tears left me speechless in the bathroom that evening, and all I could do was to kiss that head that now extends up to my shoulder and send him off to bed with his dry hair.
Even though the days of hospital and treatment are behind us now, one never knows when a buried memory, an unprocessed emotional response to something minute, might leave you hyperventilating in the grocery check-out line or unable to socially engage the way you did with friends with whom you once shared everything.
As a parent, I am learning to listen to myself and not dismiss these strong responses as foolish overreactions. Like many families of children who have faced life-threatening illnesses, our son’s diagnosis and his treatment was one of the most traumatic events we have experienced in life.
For me these emotional responses are often related to my senses: the tone of a hospital beep, the sound of the name of a medicine used to save Josiah’s life ten years ago, seeing the name of a little friend who died spelled out there on the pharmacy screen display but this child has a different last name and is still here fighting.
These emotional triggers can leave me feeling ridiculous for overreacting and weak for letting it still get to me. The words in italics are lies I used to believe. Now I allow myself to cry when I need to and write when something seemingly small affects me deeply.
I could fill a small notebook with the upsetting ways my own panic attacks and hyper vigilant anxiety over my son’s safety have shocked and surprised me.
But as I said, I am learning to listen to myself and not dismiss these strong responses as foolish overreactions. So that night, when the seemingly mundane task of drying my son’s hair became something so much more, I wrote this to Josiah:
You are nine — years full
And you have as many scars to match.
Those long locks of hair hide
A lot of them there.
They are nine — surgeries necessary.
New fears wrestled with each one
Trying not to compare
Hoping toward the day you’d grow hair.
Everyday I traced those scars
On a bald child’s head
I kissed the lines
of those life-saving incisions.
Today I brushed your hair back
And I saw your steady green eyes
Layers of thick brown locks
Now cover those scars
They’ll always be a part of you on your surface.
You are stronger for it, son.
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