My son Dan was born on September 10, 1997. I was working as a nurse at the time and decided I wanted to have a water birth at home. I remember being in the warm, soothing water after Dan was born and looking down in wonder at this pink, blonde, baby boy, whose eyes were grey-blue except for one small brown triangle in his right eye. We always joked it was the one thing he got from me.
Dan was an easy baby, who plumped up quickly from nursing. I started to wean him when I was pregnant with my daughter. It was during this time that Dan began to get sick. He had his first bout with pneumonia before the age of 2.
When he was 2 ½ years old, after many tests, Dan was diagnosed with Ataxia-Telangiectasia, a rare, genetic neurodegenerative disease with no known cure. Literally translated, Ataxia means wobbly walking and telangiectasia is a word that describes the spider veins that make the eyes look bloodshot. The shorthand for the condition is A-T.
As Dan grew he went from walking on his own, to needing to hold your hand, to needing a walker, then a wheelchair, then a power chair. When the kids were young we would sometimes eat dinner out on our porch and if the kids burped loudly they had to run to the end of the yard and back as “punishment.” Dan took pride in doing his best to run just like his brother and sister. He always wanted to be treated the same as they were. It was hard for me to do that at times, being a worrier by nature, and I would often jump to help Dan at the smallest signs of distress. He once said to me, with his wry wit, that I had EMHD, and when I asked, “What is that Dan?” His reply was, “Excessive Mom Hovering Disorder.”
Our Dan loved all things Marvel, but especially the X-men. Wolverine was his favorite superhero because of his tragic backstory and his sarcasm. Dan used to wear a bracelet with the Wolverine quote, “I’m the best there is at what I do, but what I do best isn’t very nice.” Wolverine embodied for Dan that even when the odds were against you, you could still find some ironic humor. When we were given a trip to Comic-Con, Dan went as Wolverine, and he looked just like him. One of the things we loved to do together was to go to movies; Marvel, DC, and Dragonball-Z were favorites, and even as the pieces of equipment required to get him there grew, we made it to the theater and would sit together in the handicapped section. We often took selfies with our 3D glasses on to send to our family. We loved watching the challenges the heroes faced, and the courage they found, often through incredible hardships, to overcome them. They were some of the happiest times we had together.
Dan was often sick because kids with A-T typically have an immune deficiency, and his mouth, nose and lungs had no protection from viruses and bacteria. When he was 10, he had to have a feeding tube placed in his stomach because he couldn’t eat enough to sustain his growing body. As he entered his late teens, his hospitalizations became more frequent. After a trip to Disney World, where I was running a marathon to raise money for A-T research, he got a pneumonia/flu double hit that kept him in the hospital for most of that winter. His lungs were now damaged to the point that he required oxygen all the time. I remember him asking me “why can’t they use a 3D printer to make me a new set of lungs?” His questions were so often poignant and the answers so often illusory.
Dan received all his care at A.I. Dupont/Nemours Hospital for Children. Almost everyone there knew Dan and he was loved by everyone who met him. But Dan hated being in the hospital. Each time we had to go back it tested his resilience and his spirit. He missed being at home in his “Dan-cave” where he had a flat screen TV and a Playstation for his games. He loved God of War, Dragonball Z and Lego Marvel Superheroes. Even more, he loved his brother and sisters, his step-Dad, and our three dogs. Home was always his favorite place to be.
On his 20th birthday Dan’s doctor told him that his best chance of getting home would be to have a tracheotomy, a surgery to make an opening in the windpipe that is necessary for breathing support. It was either that or going home with hospice. When the doctor left the room and it was just Dan and me, he looked at me and said, “Mom, I’m not ready to die.”
As it turned out, Dan decided he would get the tracheotomy. True to his nature, on the day of the surgery as we stood nervously around him, he smiled at us and as they wheeled him away he turned his head and called out “Yabba, dabba, do!”
After the surgery, we spent many more weeks in and out of the hospital. In January of 2018 we were told that Dan’s only remaining option was to go home was with hospice. On one of our frequent drives to the hospital Dan had said, “Mom, I don’t think they can fix me,” and sadly, it seemed he was right. Dan’s homesickness was making his life increasingly difficult and pushing his resilience to its limits. At the time, two things that were keeping him going, getting home and the upcoming release of the movie Black Panther. Everyone we knew, including everyone at the hospital, tried to get a copy of it but were unable to do so. Instead, on his final day as a patient there, his nurses, doctors, and therapists lined up along the hallway linking their hands above his head to make an archway of arms that led to an auditorium. The hospital had arranged a special showing of Thor Ragnarok just for Dan, our family and the staff who knew him best. They wanted to send him off with a celebration.
After Dan died, his nurses allowed me to help with his his bath. I had given him his first bath as a baby and I wanted to be a part of giving him his last. We were home, just as we had been for his birth, just as Dan had wanted it. Bathing him, touching my dear child, now so still, I removed all of the devices that had been placed in his precious body; the tracheostomy tube, the stomach tube, so representative of the struggles he had been through. It felt sacred; a consecration of a life of love, courage and perseverance.
We dressed him in his favorite Dragonball Z t-shirt and a pair of shorts he often wore. I lovingly washed and brushed his hair. His room was quiet and still without the sound of the ventilator, the feeding pump, and the suction machine. All that was left was waiting for the funeral home to come for his body. Dan and I were alone, as we had been so often during the course of his life. The television was on and by some strange coincidence, X-men Origins: The Wolverine, came on. As the images began to play across the screen, I sat down by his side, took his hand in mine, and together we watched it, one last time.