To the outside world, my role as mother for my son Robby was clear while he battled a serious illness. I was the primary caregiver, the point of contact for the medical team, and the information hub for family and friends.
But I didn’t and couldn’t do it alone. My husband Brad and my daughter Laura were vital to everyone’s well-being even though their efforts were often not out front.
Throughout the years of Robby’s illness (anti-phospholipid syndrome), Brad stayed the course and went to work. From the outside it may have even seemed an easier road out of the daily fray. Brad went to the office every day to run a team, build business, and focus on results for his clients. It has a certain appeal, right?
But look at what that actually means. Brad left his home every day knowing that his son was ill, and that his wife was grappling with dangerous uncertainties and daunting logistics. Sure, we decided on this strategy together, and he trusted that I could handle whatever we encountered, but that doesn’t mean it was where he wanted to be. What he wanted most was to be present and supportive for his family.
The bottom line was that what we needed most, was him at his job, earning his salary and the all-important health insurance.
Work was most definitely NOT an escape for him, in fact, it was often an excruciating choice. So, compartmentalizing became a survival skill for Brad’s highly demanding job. He tried not to let fears about Robby’s well-being leak into his workday, and tried to forget about work pressures when he was home. It was possible sometimes, but at some point all walls are permeable to relentless force. Stress seeped into the cracks, and its power was cumulative – each crisis might be manageable on its own, but the effort was grueling by the end of a long week.
With so much going on, we prioritized energy for problems we could actually solve, and Brad was quick to cut through logistics. Hard to catch during the workday, he arranged a signal for when I really needed to speak to him – I would call once, and if he didn’t pick up I would call back immediately. Brad always picked up the second time, no matter who he was with or what he was doing.
One morning as I was finalizing Robby’s discharge from the hospital, I called to tell Brad that he needed to go home right away to meet the technician delivering some new medical equipment. He didn’t ask a single question or try to finagle a more convenient time. He understood that I wouldn’t ask unless it was important, so he just said “Absolutely”, dropped what he was doing, and was out the door in minutes.
It was incredibly comforting to know that we were his non-negotiable priority when we needed him.
One of Brad’s toughest challenges was determining when his presence would be most valuable, or if he should save his time off for a future (maybe worse) day. Sometimes that meant staying at the office even while Robby wasn’t doing well, other times he’d work from a laptop in the hospital room. He continually juggled his schedule to attend pivotal medical appointments, and would leave the office earlier so he could spend time with us, even when that meant working late at night to make up for the time he missed during the day.
It felt like an impossible calculation, but it was necessary since Robby spent more than 150 nights in-patient over the four years of his illness. Unfortunately, no matter what Brad did, he felt like someone was getting short shrift of his attention.
At the end of the day, Brad always walked in the door with a smile and energy to lift everyone’s spirits, but it could be tricky for him to jump into the shifting rhythm of our new normal when he got home. He knew the general plan, but was sometimes less conversant in the nuances. Maybe he would need clarification about the complicated medication schedule, or when to be concerned about certain symptoms, and he didn’t know how Robby liked his tea or his pillows arranged. This caused friction sometimes – “you’re not doing it right” is not exactly a welcome response (both from Robby and from me) when all the poor guy wanted to do was help.
On the other hand, Brad valiantly took sole responsibility for the monumental task of managing the health insurance. An odious task under normal circumstances, this was downright Herculean in our world. Brad was adamant that we divide and conquer — I advocated to get our son the right medical care, and he faced the foot-high stack of impenetrable six-figure (!) bills and insurance disputes.
This is not to say that Brad’s contribution was confined to picking up pizza and wrangling paperwork. In fact, those impersonal chores motivated him to create more opportunities for actual father-son fun. Never a videogame player in the past, Brad tried (without much success) to keep up with Robby in “Assassin’s Creed” or “Madden NFL”. He was a tireless viewing buddy for action movies, a worthy opponent for chess, and even managed to elicit rare enthusiasm by taking Robby skeet shooting.
Most importantly, Brad’s patient temperament and light touch were a welcome respite in a stressed family world. Robby was often glad for the changing of the guard after spending way too much time with his mother… and I appreciated the relief parenting too. Brad’s calm helped keep me grounded when I needed to vent frustration, or problem-solve a new setback, or just renew my resolve.
It wasn’t always about doing something specific, just his presence was deeply reassuring.
During all of this, there was little leftover for Brad, and he was ok with that. There was less time for everything from chores, to fun, to sleep. So laundry piled up, or dinner was scrounged from leftovers, or tempers were short after a long day. Brad often said that he understood that everyone was doing their best, and that was enough. He put aside ego and personal needs in favor of the big picture, willing to take front or back seat as the situation required. Not a grudging sacrifice, but a gesture of love.
Brad stepped forward most poignantly one final time as Robby’s father, at his funeral. That he spoke in his eulogy with heart and humor was not a surprise. But he astonished me and everyone present when he decided to join a group of our friends performing a haunting a cappella version of “Oseh Shalom” – a favorite hymn he used to sing as a lullaby to Robby. He hadn’t sung in public in more than 20 years, but was deeply moved to add his voice in an exquisite expression of love that went far beyond words.
Brad’s generous spirit enabled him to be the best possible father and husband in the worst possible circumstances. There is true honor in what he did and what it meant to our family. Brad never looked to be recognized for his contribution, but we always noticed the profound difference he made – sometimes in spite of and sometimes because of how quietly it happened.
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.