By John Knowles
“My wife is having surgery on Friday, we need to wait a few weeks. I’m the only one that can take care of our son while she recovers”, I told the doctor. I was still lying on the table, where the he had just completed a heart catheterization. The doctor patted me on the shoulder, said okay, and left the room to speak with my wife, Maggy.
The catheterization had found the reason I was getting winded so fast when I went running, three blocked arteries. While I was getting dressed the doctor was with my wife in the waiting room telling her that the next stair I took could be my last, and he didn’t want to let me go. We were both equally shocked. I knew heart disease ran in my family, but I thought I was beating it with all those vegan meals and exercise. It’s times like that where I know we have a strong marriage. In a few moments we had our decision. The roles for now would be reversed. Maggy’s surgery wasn’t as urgent so she would postpone it to care for me and our son. I would go into surgery instead of her. Five more minutes while we reset all the logistical school, work, and home plans that had been set months in advance and she was off to pick up our son. I was in the back of the ambulance on my way to the hospital downtown for surgery.
I spent that night alone in the hospital in preparation for my triple bypass the next morning. My mind went to my youngest son, Adrian. It was getting late and he would be finally falling asleep back at home. Six years earlier, he was diagnosed with autism. Ever since then each night when he would fall asleep, I would put my hand on his curly little head and say a silent prayer. In the early years they were bold prayers for a breakthrough. I remember feeling a calm assurance that everything would be okay. Surely, he would overcome his autism, go off to college and have a “normal” life. The last few years these unanswered prayers devolved into desperate pleas. He still wasn’t talking, and he was reaching that age at which most kids who don’t talk never do. I couldn’t bring myself to accept a world where I would never have a conversation with my boy. A parasitic anxiety replaced the calmness, and I would beg for the smallest of improvements – a new word, a good night’s sleep, or a tantrum-free day.
Alone in the room I stretched out my left arm and opened my hand, imagining placing my palm on his sleeping head. Maggy and I sometimes tiptoed around the topic of our biggest fear. What would happen to Adrian when we passed on? Who would take care of him? My answer was always “I’m going to live forever!” and a wink. Of course, it was a silly answer to a serious question, but it always got a little nervous laugh and let me escape the discomfort of not having a real answer. But now, here I was facing my own mortality. My chest would be sawed in half in a few hours. I was sure the surgery would be fine, but I knew for sure that the cholesterol would be back eventually to shorten my life, just as it had my grandfather’s.
Another new worry was bothering me too. It was my oldest son, Andrew, who was 19. He had grown up happy and healthy with no problems at all. I had a secret hope that he would be the one to look in on Adrian once my living forever plan failed. Recently though, he had become sort of clumsy and we were having it checked out. Or latest visit to the neurologist was just two days ago and he had no answers yet, only orders for more tests. So, I stretched out my right arm and imagined placing my right hand on his head, with my left on Adrian’s. I hadn’t cried in years, but the tears started rolling. I don’t remember if I even got out a silent prayer, I felt so trapped and useless lying there in a hospital gown naked, shaved, and chained to an IV machine. My family needed so much, and I was beyond useless. I would be a burden for weeks while I recovered. A few hours later I was wheeled into the operating room. The last thing I remember was the nurse telling me that at 42 years old, I was their youngest triple bypass of the year. Yeah, me!
The doctor said to wait 4 weeks after my surgery before driving, but I drove at three and half weeks to make Andrew’s follow up visit to the neurologist. The latest test results had come back, and he wanted to give us the diagnosis. Here is where I so wish the story changed for the better, but that just isn’t the way life works. Andrew’s nerves are dying off due a mutation on the FXN gene. It is called Friedreich’s Ataxia (FA), the most cursed disorder you have never heard of. There is no treatment, no cure, and it is terminal. The neurologist was brutally straightforward as he told us that it would slowly take his ability to walk, to speak, to hear, and see.
There is a special kind of hurt that I think all fathers know. It’s that feeling we get when we see our kids suffer and we are powerless to prevent it. It’s what we feel when we hold them while the needle goes in during their first immunizations. It’s what we feel when they get picked on at school, or get their heart broken for the first time. This hurt is the same, only it settled inside me and never really went away. I feel it in my chest when I breath in, I feel its weight in my feet with every footstep. It’s there when I wake up at night. If I’m not careful it lures me into isolation, clouds my mind, and flashes up in anger.
There is a verse from Proverbs that I like: The human spirit can endure in sickness, but a crushed spirit who can bear? A lot has happened since that eventful month in the fall of 2017. My boys are such an inspiration, it is impossible to have a crushed spirit.
We found a clinical trial for Andrew with a medication that is showing some promise. It involves lots of trips to Atlanta for bloodwork and humiliating tests, and he smiles through it all. His condition has continued to deteriorate, mostly impacting his walking, but he might be in the placebo group, we will find out in August. He recently landed his first “real” job working as a tutor in UNC-Charlotte’s continued educational web developer program. He loves working on his little Miata car and just finished converting it to a turbo. I now have a second biggest fear.
Adrian still does not talk, and his behaviors can sometimes be very challenging. Every day he has tears and joy. When he is happy it is the purest joy I have ever seen, he just can’t contain himself. He courageously does 28 hours of therapy, week in and week out.
Maggy had her surgery a couple of months after mine and made a full recovery. She seems to have an unlimited supply of love, perseverance, and energy.
I still say a silent prayer over my boys each night, but the desperation is now gone. Now it is an acceptance of the challenges and joy in the blessing of today. It is a prayer for the grace to be able to handle the things as they become more difficult. It is a feather of hope yet for something better in this lifetime, but joy in knowing that if not, it will be there in the next. There is still fear and mourning, but mostly joy.