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.

As a mother, I am both proud and sad when I think of the life my daughter Laura led over the years her brother Robby was ill. She demonstrated extraordinary compassion and poise, but I am profoundly sorry for what she endured, especially since her role was harder than it may have seemed from the outside. She stood a few steps past the center of the drama – not in the line of fire, but also not inside the inner circle.

Even as a child, Laura had the personality that would serve her in the specific challenges she faced. Watchful and whip-smart, noticing everything. A classic oldest child, Laura loved being a little mother’s helper, and entertaining her little brother with games and books.

We have adorable family video of the two of them playing together (Laura is 5 and Robby is 2), and you can hear her encourage him saying, “You can do it Robby!”

It’s hard to know whether nature or nurture played a larger role in their dynamic. Robby barreled into a room, demanding things in his particular way; while Laura was adaptable and reveled in trying new things. She seemed to understand instinctively how to be flexible to balance his rigidity, which certainly made for less sibling conflict over the years, but it also meant that Laura’s voice could be harder to hear.

They were both teenagers when Robby’s illness first appeared, and it foreshadowed much of how Laura would need to function in those circumstances going forward – calm in a crisis, coping through uncertainty, and continually adjusting to a new normal.

While away in Colorado at a summer program in 2012, Robby developed blood clots in his lungs and leg, and needed to be urgently evacuated to a Denver hospital. My husband and I jumped on a plane, leaving 19-year-old Laura home on her own. Of course we called with updates, but focused mostly on the necessary facts: Is he out of danger? What happens next? When will we come home? There wasn’t much time or bandwidth to answer many follow-up questions or help her process her feelings and fears right then. And typical for Laura, she was determined not to be an extra worry during a crisis, so when we asked how she was doing — she was always “fine.”

After two years of flare ups and hospitalizations, the illness (anti-phospholipid syndrome) finally seemed under control by the spring of 2014. Treatment was working, and Robby was set for college a couple of hours from home in Philadelphia –the same city with Laura. It wasn’t intentional, but it sure meant we could breathe easier knowing they had each other, just in case.

Looking back, it seems that our relief may have tempted fate…

In the winter of 2015, Robby’s APS came back, much stronger than before. Of the five hospitalizations during that semester, Laura was often first on the scene and by Robby’s side before we arrived. She would drop everything to be present as a caring sister and supportive daughter. She definitely wanted to be there to help, but I also know that it took time and focus from her life, and gave her a burden of worry. She didn’t want to add to her parents’ concerns, so she carried this burden largely on her own, supported by her closest friends.

After graduating that spring (summa cum laude… I can’t help bragging), Laura came home to find her first real job. The household was highly charged, and lopsided in attention. The family schedule, entertainment choices, and even dinner menus were organized around Robby’s needs based on his chemotherapy treatment, physical therapy, online classes, not to mention his unpredictable moods. Laura didn’t complain, but she did leave the room when things got heated in Robby’s angry outbursts. She hated seeing him vent his frustration so intensely at us.

Laura was struggling with a familiar challenge – it’s very hard to remain sympathetic and unconditionally loving with someone who is sometimes downright obnoxious. And it is unnerving to face so much uncertainty about the future well-being of that same loved one.

People often comment about how similar Laura and I are. It’s true, we look alike and share many interests and abilities. But temperamentally, Laura is much more like her father. She is eminently capable, but doesn’t need to be out front, and actually prefers to watch first and jump in when she sees an opening. She abhors conflict, and is adept at diffusing a situation with calm kindness and wry humor. It’s easy to admire how even-keeled she remains even under enormous pressure – but look closer, and you might catch the tiny twitch of stress that belies the effort it costs her.

During these fraught times, we were grateful for Laura’s special gift for connecting with her brother. She could make him laugh (even at himself!) with a sarcastic comment accompanied by just the right smile. She found ways to engage him in activities that would spark his interest and distract him from the struggles of his daily life – a shopping trip for new shoes, a game of cards, a silly movie. Robby didn’t feel the need to rebel against Laura’s attention – on the contrary, he enjoyed sharing her world as a fellow young adult. I like to think that their connection brought comfort to them both. Laura wanted to spend time with her brother, and Robby always felt better for her lighthearted gestures of love.

As parents we wanted to keep Laura updated about her brother’s status, but we also needed to preserve his privacy. Laura wasn’t part of the initial discussion with doctors, which meant her debrief talks with us were secondhand, and sometimes limited. So she asked only a few questions, and prioritized being helpful, rather than garnering support for herself. Brad and I could always lean on each other, but with no other sibling to share the same perspective, Laura could sometimes feel isolated.

And like her father, Laura needed to sustain focus for her own life while her brother was ill – from college through her first job as a teacher. It was enormously challenging to keep up with everyday life and work while something was profoundly wrong in her family, but Laura managed with pragmatism and sensitivity. Her grace under pressure was incredibly valuable to all of us during that period. Laura could leave a full-day at work and come home to help cook dinner for the family, regale us with stories about her students, or stay quietly on the sidelines when tensions were high.

From her vantage point, Laura had a clear-eyed understanding that her brother’s struggle was dangerous, and that his life was at stake.

The weight of this knowledge seeped into everything in our family life, changing all of us forever. Through her experience, Laura learned lessons that most people don’t face until much later in life, if at all. She likes to say now that very few things qualify for an actual “big deal”, and she knows it’s not worth worrying about “little deals”. This is not the blithe breeziness of youth, but a deep understanding of how precious life is, and what is truly most important. This insight inspires her to commit her time and effort to things that matter – like being a passionate educator, or a steadfast friend.

Ultimately, I have made peace with the regret I feel that her path was so difficult, and I can see that it is part of what made her the extraordinary young woman she was and is. The most arduous aspects of her story strengthen her innate capacity, and that is a gift for everyone who will cross her path in the future. Laura remains one of the most thoughtful, grounded, and wisest people I know – Robby was lucky to have her for a sister, and I am lucky to call her my daughter.

________________________________________________________________________________________________________________

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.