In my more cynical moments, I have described myself as “everyone’s worst nightmare walking around”. It sounds dramatic, I know, but isn’t having a child with a serious illness every parent’s deepest fear? No one wants to be reminded of how fragile and unfair life can be, so it can be painful to watch someone do all the “right” things, and still end up in life’s scariest place.
That’s why the friends who were by my side in this scary place were so precious.
Sometimes friends made a big splash with their support. One family unearthed local connections to get a signed game ball from my son’s favorite football team. Another group of friends anticipated the toll stress took on the body and gave massage gift certificates to my husband and me. A group of colleagues sent an envelope stuffed with get-well notes and drawings to bring a smile to a teenager few had met, and gift cards to lighten my family’s load. Friends from our synagogue reserved special seating so my family could attend a favorite crowded event with my immune-compromised son.
And as grateful as I was for these generous gestures, it is the small moments of grace and presence that made the most difference in our lives.
What really mattered was that my friends could be with me wherever I was. Not literally – although they often offered to sit by my side – but emotionally as well. As peers with common experience, and often in closer proximity than family, friends extended my support system. They patiently listened to intricacies of my son’s treatment, distracted me from relentless stress and anxiety, lent their energy to logistical challenges, and steadily reassured me about my judgment and choices.
But how did they know what I needed? The truth is they didn’t, and couldn’t, so they learned to ask. Did I want to vent? Did I want advice, or help with an errand? Or maybe just a vacation from my problems by focusing on someone else’s world for a while.
As I navigated a demanding, but unpredictable schedule, I appreciated when friends would let me know that they were thinking of me – no requests for updates, no probing questions, just a message of love without expectation of anything in return. I used to think emojis were kind of silly, but I found that 😊 with a couple of words could spark a smile even on a tough day, and sometimes that was enough.
But sometimes a smile wasn’t enough. As the path became more arduous, we were fortunate to have friends who were ready – eager, really – to jump into battle by our side. My son’s doctors wanted to try an experimental medicine renowned for being astronomically expensive and rarely approved by insurance. Our friends strategized with us, ready to storm the ramparts of the insurance company or rally public opinion or whatever else we could think of. To be honest, I think it was a relief to be able to project an enemy to fight instead of patiently waiting and watching from the sidelines. And it was deeply gratifying to feel their fighting spirit at our side.
Interestingly, it wasn’t only my closest friends who demonstrated special sensitivity. After one long crisis, I squeezed in time for a haircut. As I introduced myself to the new stylist, I got unexpectedly choked up as I explained I was taking a rare break from dealing with a family emergency. She didn’t ask for details, shifted smoothly into friendly chit chat, and graciously just kept working even when I started crying silently with release as she washed my hair. Months later I learned that she had similar personal experience, and deliberately held off sharing this to avoid turning our first meeting into a conversation about her.
I think the hardest task for my friends during this time was living within the limits of what was possible. That impulse to DO SOMETHING is powerful! They love me, they care about my family, they wanted to help.
The tricky part is separating your feelings and needs, from what your friend actually needs.
One friend demonstrated such genuine unselfishness as I told her that we were transitioning my son into hospice care. It was a surprising turn, and she was brokenhearted about the implications. In a quiet moment, she brushed aside her tears and pivoted deftly from grief to tactical support as she helped me brainstorm ways to engage my 20-year-old son in activities outside his daily medical experience. Her attention spoke volumes about the depth of her understanding that built comfort for future conversations.
Some friends came through even without the emotion explicitly expressed. My husband’s long-time friend and colleague covered for him at work countless times with low-key, unquestioning support. During a rough patch when he just didn’t have the wherewithal for a task, his friend would say “don’t worry about it” and step in without hesitation. He knew what our family was facing, and this was his way of helping. He may not have been the guy for the earnest heart-to-heart talk, but his stalwart back-up relieved some of the heavy burden my husband carried every day.
Often, the best comfort from friends was simply their presence. They would come for dinner or visit for the weekend, and slide into the rhythm of our family life. Happy to play games, watch a movie, or talk smack about rival football teams. They looked past the signs of illness – the presence of medical equipment, new physical limitations, or my son’s changed appearance – and still saw the individual underneath. They projected ease and normalcy to soothe the disruption and frustration and fear. It was disappointing to learn that not everyone was similarly capable – some people retreat away from vulnerability, and become more distant to avoid an uncomfortable reality.
I always admired the friends who were bravely able to acknowledge the true nature of what was happening. Positive attitude and hope can be energizing; however, sometimes the worst does happen, and we need to honestly face a new reality. I was infuriated by casual platitudes of “everything happens for a reason” or “don’t give up hope” since no amount of positivity was going to overcome the limits of my son’s body. I did not want a cheerleader for a miracle. I wanted a brave companion ready to stand with me in this monumentally frightening place.
In the end, bravery is not about the absence of fear. It’s about the capacity to keep going despite the fear. My friends who faced that “worst nightmare” defined their friendship by the ongoing choice to love me through whatever twists and turns the path took. Maintaining friendship isn’t easy even in the good times – finding time together, appreciating each other’s gifts, and overlooking our foibles. Some friendships fizzle outside of their original circumstances (like a workplace or school), some evaporate when tested by fire, while a lucky few are forged even stronger in the heat of life’s biggest challenges. I am profoundly grateful for the beloved friends who have walked beside me, knowing that we are still there for each other no matter what.
Caryn Anthony is a nonprofit consultant and executive coach from Silver Spring, MD, and is also a volunteer member of the Patient and Family Advisory Council for Children’s National Medical System. She is the author of “Any Way the Wind Blows,”—a blog geared for families raising a child with a significant medical condition. Her writing has also appeared in The Huffington Post, Grown and Flown, and Modern Loss.