The title for this blog comes from “Bohemian Rhapsody” by Queen — one of my son’s favorite songs.
As a parent to a child with a serious illness, I spent a lot of time pushed by forces outside my control. Sometimes I battled simply to stay upright against the strength of that gale, and sometimes I crashed helplessly into places I didn’t want to be.
My life was filled with uncertainty, so I learned to be ready for whatever might come next. Sometimes that meant being flexible and responsive, and sometimes it meant allowing something to blow over.
Think of a tall tree in the wind. Its strength is grounded in deep roots and the rings of experience that build its trunk. But its ability to weather a storm comes from the flexibility of its limbs and the space it allows for strong winds to blow through the branches.
Don’t be fooled by the pretty imagery here. This was not some Zen journey of self-actualization. It was a difficult, sometimes excruciating experience.
More importantly, this was not my experience alone. My son Robby and I walked through this together. We shared inside jokes (about hospital food) and frustrations (from long-waits in medical offices). We argued (about his stubborn independence) and we cried together (rarely, when we feared the worst). Through it all, we relied on each other — I appreciated his strength and resilience as he learned from my advocacy and organization.
Robby and I began our journey as a mother and son patient advocate team in 2006 when he developed frequent, intractable migraines at 10 years old. The severe headaches persisted for three years, requiring a combination of medical treatment, complementary therapies, and plain old push-through-the-pain toughness on Robby’s part. Even as a middle-schooler, he was always an outspoken voice in his care.
In 2012, the stakes increased when Robby was diagnosed at 16 with anti-phospholipid antibody syndrome — a rare blood-clotting disorder. It presented as a chronic auto-immune disease to be managed with medication and some lifestyle limitations, and also included occasional flare ups that required acute care. While away at college in his freshman year, the illness accelerated with more dangerous and frequent episodes of uncontrolled clots throughout his body. Eventually, Robby grudgingly agreed to return home as treatment became more experimental and his health became seriously compromised.
By the fall of 2015, I stopped trying to juggle my part-time work with full-time caregiving. I left my job and reorganized my life so that I could support Robby through numerous hospitalizations, intense and changing treatment protocols, all while coordinating an ever-expanding medical team and ever-shrinking options.
The illness caused major lung damage, constant pain, a profoundly compromised immune system, and deteriorating strength. It also left Robby extremely frustrated and angry. His self-image as a strong young man with a black belt in karate and a zest for independence did not match the person now forced to live at home with his parents, isolated from friends, and grappling with the reality of life and death.
After four years fiercely battling, Robby’s struggle ended on July 19, 2016 when he died of a massive blood clot to his lungs. Even though we knew he had limited time, his death was a huge blow. Shocking but not surprising, we would say.
In the wake of the loss of my son, I have a deep need to honor the learning I gained in my life with Robby and these challenges. And I’m especially cognizant of how lucky I was in the resources I had — excellent health insurance, fearless advocacy skills, and a loving support network of family and friends. Not everyone has all of this, but I strongly believe that everyone has the capacity to learn to make their situation a little better.
Most importantly, I want to help families keep their child’s voice at the center of their caregiving. It’s often hard for a non-adult to be heard amid the confusing and intimidating cacophony from a medical team. I’m not suggesting that parents abdicate their authority here. I am suggesting that parents create a partnership with their child. Look for (age appropriate) ways to share power — to create the center of gravity around the patient’s perspective.
If you’re reading this, then you or someone you know is immersed in a world where the old paradigm no longer applies. All of the pressures of the old world remain — work, school, finances, family life —but now with so much more at stake. No one is easily ready to handle that alone.
I’m offering this blog to share practical tips, stir reflection and insight , and maybe even share a laugh. I hope this will relieve some of the pressure as you connect to your best self as a parent and caregiver.
The point is this: even when the situation is overwhelming, there are things you can do to make life a little easier and more peaceful for you and your child. You are better together… any way the wind blows.
I live in Silver Spring, Maryland with my husband of 30 years and our two cats. For the last 28 years I have dedicated my professional life to the nonprofit sector, where I am deeply committed to serving mission-driven organizations and the people who make them run.
As I reflect on my role as a parent and caregiver for Robby, I realize that my professional background as a management consultant and executive coach informed my style of problem-solving and just listening. I’m happy to share my approach and hard-learned lessons so that you can access concrete tips, resources, and insights that made my life easier.