My brother is the baby of the of the family. The last of three kids. The only boy. That of course guarantees that he’s doted on. In retrospect, this may have saved his life. Let’s get some background. My brother is currently 35 years old and he’s a liver transplant recipient. He was transplanted July 8, 2018 through either divine intervention or a grand dose of luck, depending on your religious affiliation.
As his health proxy, I had a front row seat to the entire process. It was hard. It was emotionally and physically grueling. Nothing compared to watching the father of three being forced to parent long distance while coming to grips with the very real possibility that he might die. But let me start at the beginning.
My younger brother had been dealing with for many years what we now know is ulcerative colitis. We grew up in Jamaica, West Indies. Up until 2015, he was permanently living there with his wife and three children. Jamaica is known for its beautiful beaches and people, not so much their diagnostic medicine. So periodically, he would have severe flare ups that would see him being hospitalized in debilitating pain. Believe it or not, he was usually given pain killers and sent back home. Things changed in early 2015. He was progressively getting worse unbeknownst to us. Rapidly losing weight and just wasting away. He was now constantly on painkillers just to survive a regular day.
One Sunday evening, out of the blue, I texted him to ask how he was feeling. The response, “I can’t explain, but I’m not feeling well.” Immediately alarm bells rang for me. It was déjà vu. Our dad had died nine years earlier. Similarly, he just got sick and progressively got worse, with no clear diagnosis even upon his death. I called mommy and told her that I was booking him a flight to New York that same Tuesday. When I made the travel arrangements and confirmed with my brother, he acquiesced. That was the biggest indicator that something was terribly wrong. My brother hated New York.
That’s where every day parenting ended for him. He was admitted on sight and spent thirty days in the hospital. Ten of those days in the ICU. He was officially diagnosed with primary sclerosing cholangitis (PSC). A long-term progressive disease of the liver and gall bladder characterized by inflammation and scarring of the bile ducts. There is no cure for the condition and it ultimately will lead to liver failure and death without a transplant. For the next eighteen months, he would spend about five months in New York being treated, go back home for about four weeks, then return to the US. We all knew he was marking time, as a transplant was the only real option for survival. Liver transplants were not available in Jamaica.
To understand the effect the illness had on how my brother parented, you would have to know the kind of dad he is. His kids at the time were twelve, five and three years old. One girl and two little boys. They are his everything. The reality of not physically seeing them every day, and worse, the possibility of dying and leaving them was a huge blow. My mom and I were busy every day, trying to get him the best care and keep him alive. His thoughts and heart were back home with his kids.
He was forced to develop a new normal. He was fortunate enough to receive excellent medical care. That we will never take for granted and are forever in debt to the liver transplant unit at Mount Sinai Hospital. But living in Jamaica was no longer an option. Transplant recipients have strict routines that must be followed. Moreover, in the event of an emergency, the facilities in Jamaica were just not equipped to treat him. His family did not have the option to move to the US. But most importantly, he was alive and doing well. Parenting now had to adjust to his new normal.
Daily video calls are routine. There’s no longer the case of always being present, so every call, every text, every picture now fills out a pattern or puzzle that has become his quilt of parenting. The nuance of a voice, a minute change of facial expression now triggers concern. Why? He’s forced to scour their features every day, so he’s now in tune when something is off. How effective can disciplining be when daddy is thousands of miles away and you very likely only see him once a year? Not very effective. But daddy refuses to focus on being the bad guy. After all, he has limited opportunities to be the good guy.
What weighs on his mind? Am I adequately providing? How is my teen daughter coping without a physical father figure? Who’s teaching the boys to ride their bicycles? Is Father’s Day as empty for them as it is for him? He wakes up everyday drawing strength from his newfound faith, grateful that he actually gets the chance to wake up. Grateful that even though he’s a long-distance dad, his kids still have a living dad. And he reads his bible and prays. Claiming in faith, that one day soon his normal will change.