Neither of my boys remember me being normal. Since Rich was old enough to walk, he was sent scurrying here and there to retrieve my phone, wallet, the tv remote, a glass of water…anything to keep from having to stand and sit or walk too much. The same is true for Brennan, but I was even sicker by the time he came along. He mainly remembers living in Bentonville, AR, in the Ozarks. I’m sure to a four year old I seemed fine. It was a time of stability. Rich in public school, Christie in nursing school, me with a clean slate and no demands beyond keeping the household together so mom could concentrate on school. Our life was the most normal it’s ever been during that time. Grocery shopping, the gym, (the treadmill for me, a toddlers class for him), library story-time and lunch in the cafe on Wednesdays – our favorite – and Fridays home with mom so I could be at Rich’s school and catch up on Watchdog business (the dad’s volunteer program I supervised).
We started homeschooling in anticipation of possibly travel nursing when Christie graduated. We liked the idea of seeing the country on someone else’s dime, and though it might be a good experience for the kids. We never dreamed we’d be forced to do it because I needed a transplant. But we knew we’d have to homeschool, so we tried it. We fell into a different schedule, but life was still normal. We made new homeschooling friends, Christie was working, we were looking at homes to buy. The kids were happy, we were excited about the future.
In March of 2010 I was told I needed a transplant. I agonized on the plane trip back from Boston. How would I tell my friends? My parents? And trying to work out how to explain a transplant to the kids knotted my stomach. I knew my kids. They were going to ask questions, and lots of them. We determined not to scare them, but also not to lie to them.
“Will you die if you don’t get a heart?”
“Where does the heart come from?”
“How long will you live after you get a heart?”
“What happens if you die?”
“When you get a new heart, will you still remember us?”
“What about the family of the person who give you a heart?”
They wanted numbers. Statistic. Details we weren’t yet processing ourselves. Parents joke about not having an instruction manual for kids. We were so far beyond that. They took everything in without tears. Rich immediately wanted to know what the plan was.
We desperately sought for a heart program in the mid, or deep-south that could both treat and list someone with HCM. The disease makes up 5% of all heart disease. Transplants are required for survival in .02% of that 5%. St. Louis purported to have an HCM doc and a good transplant program. Despite the supposed HCM doc being ignorant of the disease, the transplant doc agreed to list me. This required multiple trips back and fort to St. Louis. I figure we dragged the kids back and forth, six hours both ways, about five or six times. They never complained, taking the long trips in stride. We tried to make trips fun for them, spending an afternoon at the children’s museum or a local zoo. When we realized the transplant doc had no experience or plan to deal with the Draconian UNOS regulations, we abandoned that track.
So, another difficult conversation. We had to move. Far away. They wouldn’t get to see Gramsy and Pops, Nana and PaPaw very often. Their friends, ever again. There were tearful goodbyes, but no tantrums, no resentment. They understood it was because of me, and they did what had to be done.
Then came the travelling. Every three months another car trip. They worked hard, packing, unpacking, sharing small rooms in apartments and old houses, making friends they’d leave before the friendships had time to take root. We tried to maintain those, but it was hard. They struggling with crates and suitcases and backpacks, up stairs and elevators, helping Christie make it all fit. No complaining. They saw the big picture.
I’ll never forget New Year’s evening of 2012. We’d left from a visit in Arkansas to Christie’s new assignment in New Hampshire. They unloaded the van into the new apartment, including Christmas gifts, opened but not yet played with. We went to eat and I lapsed into severe a-fib, landing me in the ER. We’d been on the road for 10 hours that day. We couldn’t leave them in an unfamiliar apartment complex (they were too young anyway), and Christie couldn’t leave me; a-fib rendered me nearly speechless and breathless. It’s burned into my brain, the image of them and Christie, curled together awkwardly in two metal folding chairs, sleeping restlessly until I was cardioverted 8 hours later. We repeated the same scene three nights later. My profuse apologies were always met with, “It’s not your fault,” or, “it’s just part of it, dad.”
We dragged them back and forth to Boston, where they say in the clinic waiting room for hours on end. So often in fact, that they were on a first name basis with the staff, who insisted we leave them in their care while we ran all over the building for tests and appointments. They brought homework, books, laptops, and took care of themselves. We made at least twenty trips to Boston over the course of two years. No complaints.
We finally settled in Springfield, intending for me to be transplanted in Boston. Finally able to participate and commit, Brennan enrolled in fencing, Rich in archery. Seven months later we were again forced to move. This time to Lebanon, PA. We had friends awaiting us there but this time there were tears. Brennan wept as he listed the eleven reasons he didn’t want to move. Rich seemed numb. They both cried when saying goodbye to their instructors.
In Lebanon, I got even more sick. By now, they were in charge of the house. Christie worked nights so they vacuumed, dusted, swept, cleaned bathrooms, did the dishes, emptied trash, did the laundry. Christie and I helped as we could, but I was in the hospital so much, it was mostly left to them. They had to be reminded often, but there were still no complaints. I was hospitalized two weeks out of every eight for another two and a half years. They visited me almost every day between homeschool activities.
Then came the TAH. In the end, they had to be responsible for me and the machine, by themselves. They went through the training, did better on the exam than the other adults,and went on the train other people. One afternoon I had a complete emotional breakdown over the situation. In what world should my children be responsible for my very life? It was too much to ask or expect. But they took it on with the same courage and decorum they’d displayed throughout the whole ordeal. They did this while watching Perry die, day by bloody day, knowing that I would be following the same path into transplant, scared to death I would suffer the same fate as he.
They treated the five month hospital stay no differently. They had their own lives, things that I imagine most kids would rather be doing than sitting in a hospital room with their dad. We spent day after day, sitting in that small room, playing board and RPG games, watching MLP and Firefly episodes, and just hanging out. They knew I wanted to be home, and they sacrificed to ease that, day by day week by week, month by long month.
There are so many other things that have gone unmentioned. Helping me in and out of chairs. Tying my shoes. Emptying urinals. Tolerating the side-effects of medications, steroids, and before the TAH, unrelenting pain that made me hard to live with. They’ve missed having a dad who could kick a ball with them, play in the swimming pool, or even play hide and seek. Because of the moves, they’ve lost friends and opportunities most kids take for granted. They’ve had to contend with postponed holidays, birthdays without dad, and disappointments too many to number. Both have missed the last game of the season, end of the year parties, and for about five years, had no stability whatsoever.
They’ve come out of it all with no resentment or bitterness, no expectations or demands that the debt they’re owed be repaid. They’ve not pulled guilt trips or acted entitled to special treatment. They seem largely unaware of how abnormal their life has been.Though on a recent trip back to our beloved library in Bentonville, Brennan and I both sat in the cafe and had a good cry. He was only five then, but all this time, I think he, like me, has been aware of the fact that we lost something important when all of this started.
Given all that they’ve carried willingly, Christie and I have tried so hard to steer them clear of extraneous drama and nonsense. I think they understood as much as we did that to have a chance of getting through this in one piece, they had to focus and not be distracted by things that weren’t important. To my mind, it has all been incredibly selfless, and I confess they did not learn to be that way from me. Where I am impatient, they are long-suffering, where I am often driven by knee-jerk reactions, they are reflective, and therefore, usually, wise.
I really can’t say it all here – it’s too much, too big to explain. I just know that they’ve somehow taken this experience, absorbed its lessons, incorporated it into who they are. I once told them I wish they didn’t have to go through all of it, but since they had to, I knew it was going to make them people who were thoughtful, purposeful, and able to survive in difficult situations. I’ve seen them do that very thing, one small action at a time as the days have gone by. I hope the rest of their lives are normal, that they don’t fall into that fifty-percentile that inherit HCM. But I know if they do, they’ll handle it with the same patience and wisdom they’ve demonstrated so far. I know it’s cliche, but I really have learned more from them than they can ever hope to learn from me. They’re my kids, so of course I love them. I think I’m more fortunate than most in that I have learned to respect them as well. Because they’ve earned just that.
They are amazing! We couldn't shells them from all of the medical stuff and saying bye over and over again. They are strong and independent sons!
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