I’m sitting next to my eldest daughter as she submits her college applications. At the end of every submission, her screen fills with celebratory confetti. Sometimes she re-taps the congratulations button just to get more confetti raining down and giggles with glee. I am filled with both joy and grief during this process.
Letting go is hard. Even harder is having to re-define myself yet again.
I don’t know what I expected when I was in my twenties, but it wasn’t this constant cycle of change, adjustment, acceptance, and upheaval. I got my Ph.D in English Education, became a university writing instructor and thought, “This is it. This is who I am.” Then the children came, and though many can both teach and raise a family, my family dynamics made it impossible.
Though at first it rankled to go from “Dr. Masiello” to “Bethany and Christa’s mom,” and there were many days I longed for my office, desk, and even my planner, eventually I dove into the stay-at-home-mom life. Over time I became mostly comfortable in my new identity, though I often still missed the classroom and the intellectual stimulation of teaching young adults how to write, read, analyze, and formulate their own ideas.
After the kids began school and I started to volunteer my time in my kids’ classrooms, with Girl Scouts, or in Catholic faith formation programs, things got more fulfilling. I was doing some teaching, though this time I was called “Ms. Diane.” That title brought me infinitely more joy than “Dr. Masiello” because it came with incredibly soft, loving hugs and beaming smiles from the preschoolers through grade schoolers I was honored and privileged to teach.
Yet then came middle school, and as the teen years arrived I started to feel more and more like a 24/7 on-call paramedic who is only needed about two hours a week. Those hours usually fell, and still fall, on a night like this one, when I have my monthly blog post due and a bunch of other volunteer stuff to take care of. Yet I never take for granted my ability to set whatever else I am doing aside and focus on what my kids need.
At the same time I have to start thinking about the “what’s next?” I’m not going back to teaching because the adjunct system is beyond abusive and I will not do that to my colleagues. It feels too late to start a new, real, committed career. Though I’m working on my novels, playing with my imaginary friends feels a little self-indulgent in a world so profoundly broken.
Of course, there is no way I am going to repair this fractured world, no way I am going to fix even a fraction of it. But as Mother Teresa said, “We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop.” Accepting that my contribution will be only a drop, the question becomes “where in the ocean will my drop fall?”
For now, it seems like my drop is hovering over the ocean of pediatric cancer. I didn’t choose this cause; it chose me. Last year, when I was in a great deal of despair, I received a text message from a friend who reads my Gloria Sirens blog posts. She asked if I would help do some writing for a non-profit, volunteer-run organization called Angels for Change. Its purpose is to ensure access to life-saving drugs, and its mission is to end life-saving drug shortages through advocacy, awareness, and a more resilient supply chain. The organization was formed by my friend, Laura Bray, after her daughter experienced three different life-saving drug shortages during her leukemia treatment. Laura was able to find those drugs for her daughter, but was haunted by the idea that other families would go through that heart-wrenching experience, perhaps with less success. She committed to helping all patients facing a drug shortage find the life-saving medications they needed.
At first I was brought on to help work on warriors’ stories for the organization’s blog. Then in January of 2021 I was invited to a board meeting in my friend’s backyard so I could learn more about the organization and possibly become their historian. I sat for a couple of hours with eight amazing women–all with full-time jobs and kids–who were volunteering their time to help Angels for Change help more families. When it was over, I walked out with the title “Director of Communications.” It was the first title I’d had in over 18 years, and I felt wholly undeserving of it. I still do. But I was always told “God doesn’t call the qualified; He qualifies the called,” and this was a calling if I’d ever heard one. So I work, and I learn, and I screw up, and I do my best to get better every day.
Because deep down I know that there are too many children with pediatric cancer diagnoses who will not have the opportunity to get better. Over 1,800 children a year die from some form of pediatric cancer. That’s 1,800 children who will never live to see the confetti fall after submitting a college application. 1,800 families who have to let go not only of their children’s presence in their home but their life on this earth. 1,800 children who will never get the chance to re-define themselves. If the average person lives for 70 years, that’s 126,000 years of life lost–years that could be spent figuring out how to deal with the effects of climate change; fighting for equity and justice for all nationally and internationally; preserving human rights across the globe; working to end world hunger, poverty, and disease; preventing the next pandemic; solving problems we don’t even yet know exist.
And yet, only 4% of national research funding goes to pediatric cancer. And though there are over 12 types of pediatric cancer with over 100 subtypes, all of those cancers are grouped into one category. So while 9% of funding goes to breast cancer, almost 6% goes to lung cancer, 4% goes to colorectal cancer, and another 4% goes to prostate cancer (to name a few) all children’s cancers from leukemia to brain to bone have to share that 4% of funding. It’s no wonder pediatric cancers are often treated with adult medicines–if they’re treated at all. I recently learned there is even a form of pediatric brain cancer called DIPG from which Neil Armstrong’s daughter died in 1962 that is still 100% fatal.
This past weekend I went to Washington D.C. for an event called Curefest which was created to bring awareness to issues surrounding childhood cancer. I left my family for five days. When I returned I was told that things were pretty bleak around the house without me. Not that I was needed, but that I was missed. I was not the 24/7 paramedic of the home any more. I was on another call, and my family had to do a little letting go of their own.
And while I definitely missed my family, I was blessedly occupied. For the first time in my life I participated in a march on the Capitol building. Before this, my only protest was when I was 16 and marched outside of Burger King in Queens to protest the company sourcing its filet of fish supply from the Japanese fishermen who were hunting whales. While I still have a soft spot in my heart for my Greenpeace days, and applaud anyone who joins any environmental cause, this protest felt a lot more meaningful and a lot more real for me.
I carried a poster with the picture of a child whose leukemia treatment had been impacted by a drug shortage. People around me carried posters of their children who were in treatment for or had died of cancer. The organizers put 1,800 pairs of shoes at the base of the Washington monument as a visual for how many children we lose a year to cancer. On Saturday night and Sunday morning we heard talks and saw performances by children with cancer, the friends and family members of children who were suffering or who had died from cancer, and doctors who are helping with better research to fight pediatric cancer. My friend Laura spoke as well, and did so beautifully. I am honored and humbled to work with such an incredible and brilliant force for change.
As I stood out on the grass in front of the Washington monument with a group of beautiful women whose souls shine even brighter than their smiles, I realize that I am well on my way to a new identity–one that makes me just as happy, if not more so, than all the rest. I will always be Dr. Masiello, Bethany and Christa’s mom, and Ms. Diane. But now I’m also Communications Director for Angels for Change, and it feels like where I’m supposed to be.
Categories: Diane's Voice, Good Works, Health, Living
Please join the conversation!