It’s been 16 years since I last spoke to our eldest son, Brandon Geoffrey Ware. Not because of any rift in our relationship (I can honestly say that there never was one) or anything like that. 16 years ago today, I stood next to my son’s bed in the Children’s Hospital in Los Angeles and watched him die.
Before he died, I uttered words that every day I wish I could take back.
Brandon was killed by cystic fibrosis. It’s a horrible disease that starves and suffocates those that suffer from it. It is a genetic disease that has no cure. None. Brandon was born in Augsburg, Germany in 1982.
He was a preternaturally beautiful child and we noticed from the very beginning that when you kissed him on any area of his skin there was a pronounced salty taste. And, not to be too graphic, but when he had a full diaper, everyone knew it. The smell was horrific. We later found out that these are classic indicators of Cystic Fibrosis.
At his well-baby appointments, they said that he was “failing to thrive”. His mother was breastfeeding him and the doctor wondered if she was producing enough milk. So we switched to formula. He still didn’t gain weight at anywhere near the rate he should have but the doctors didn’t seem worried so neither were we.
His Mom and I split up when Brandon about one. She and Brandon moved to Turkey to live with her parents. He continued to have issues gaining weight. He fell quite ill and was diagnosed with pneumonia. They treated it but his symptoms persisted.
One day, I was called into the First Sergeant’s office and informed that Brandon and his mother had been medevacced from Turkey and were on their way to the hospital in Landstuhl, Germany via military LearJet. I drove to Landstuhl from Augsburg.
They began more tests and eventually consulted a German Pediatric Pulmonary specialist. His name, oddly enough, was Doktor Doktor. Doktor Doktor told us that he was completely stumped. He had tested for everything and had no idea what was happening to our lovely little boy.
“If he was White, I’d say this was Cystic Fibrosis”
I heard those words. They made no sense to me. Why wouldn’t you check everything? As with many Black Americans, I am largely White by ancestry but not by appearance. Brandon’s maternal grandfather and mine are White. I told Doktor Doktor this and he immediately sent us down to the lab where a technician wiped my son’s thin little, brown arm with an alcohol swap and wrapped a strap with a blue plastic disk about 1″ in diameter attached around it. The disk was pressed tightly against his skin.
The technician informed us that this was called a Sweat Chloride Test. It was designed so that the disk would press against his skin and cause him to sweat. If the number of Chloride ions in his sweat exceeded a certain number…
“Your son has Cystic Fibrosis”
The entire thing from beginning of the test until Doktor Doktor informed us took about 1 hour. Neither of us had any idea what Cystic Fibrosis was and Doktor Doktor turned us back over to the US military doctor since his part of this was done. We sat in the office and waited for the American doctor, an Army Major, to return. We were both relieved that they finally knew what was wrong with our baby boy and could get on with the business of giving him whatever pill or injection or whatever that would take care of this Cystic Fibrosis thing.
The Major came in and sat down. I told him that I had never heard of Cystic Fibrosis and knew absolutely nothing about it. He started talking about whether Brandon and his mother should return to the States. He talked about lots of things. None of them really to the point. I waited. And waited. He finally wrapped up and was getting up to leave. I said “Could you just tell us what is it? What is this and how do you fix it?”
“It’s like a bad cold but you die”
With that, he walked out of the room. Brandon’s mom looked at me with shock and horror. I’m pretty sure I had the same look on my face but I honestly don’t remember. We were separated but I had promised to protect this woman. I went after the Major and stopped him. I told him the only thing keeping him breathing was his rank but that if he ever spoke to her like that again I would dead him. He apologized and offered to go back in. I declined.
That was the beginning. The life expectancy for a CF kid at that time was about 7 years old but the science was advancing. Slowly. Brandon kept one step ahead of CF. At 12, he was the first child to receive a total lung transplant from living donors. That slowed down the CF. At 16, Brandon was the victim of pseudomonas. It was killing him.
He was admitted into Children’s Hospital in LA. It was there that he asked us to just let him go to be with God. His mother and I discussed it and agreed. In the back of my mind, I held out hope for a miracle. I simply couldn’t believe that the God I loved would let my boy die. We spoke to his doctor and went over when and what would happen. They removed life support and give him an injection to ease the fear. I held his hand and looked into those beautiful, brown eyes.
“Don’t leave your Dad, Babe. Fight this. Fight it. Live.”
Those words. Those horrible, horrible words. I said them and that boy who had been raised to trust his Dad and do what ever his Dad told him because his Dad would always keep him safe listened to them. Always keep him safe.
As the life went out of his eyes, I saw that he was sorry for not being able to obey his Dad. He tried. He tried so hard but I asked for the impossible. If I could only have those words back.
On June 13, 1999 at 6:30PM my beloved son died.
Time heals nothing.