It has been fifteen years since my son Daniel’s diagnosis of Ataxia-Telangiectasia.
Dan’s day typically starts with coughing. He coughs on and off over night and his cough is relentless throughout the day. Dan requires help to get out of bed each morning. He needs assistance to sit on the edge of the bed to do a pivot transfer into his power wheelchair. When we get to the bathroom he again needs assistance to get to the toilet. When he is done I help him transfer back to his powerchair and get dressed.
We next move down to the den where I help Dan transfer to a comfortable chair in front of the television. His respiratory treatments will take an hour, sometimes longer. They start with a treatment that requires him to wear a nose plug and hold a mouthpiece with his teeth as medicated air is rhythmically pulsed into his lungs at 11 breaths per minute. I perch on the arm of the chair he sits in and hold his cheeks in to minimize any loss of air flow. He needs every drop of medication for his lung disease, another part of having A-T. Depending on the month, he then has 2-3 nebulizer treatments which can take anywhere from 30 minutes to an hour to finish. He coughs on and off through all of this. According to his pulmonologist, Dan has asthma, chronic bronchitis (inflammation of his lungs) and emphysema (destruction of his alveoli), which together represent Chronic Obstructive Pulmonary Disease. The respiratory infections that started before he was even diagnosed with A-T have taken their toll, despite frequent, prolonged hospitalizations and antibiotics. When his respiratory treatments are finally done, he takes his pills with my help, I help him transfer to his powerchair again and he heads out for his hour-long bus ride to school.
Dan has more respiratory treatments at school, and at times requires extra fluid or feeding to be given through the j-tube in his stomach. His physicians call his eating, “quality of life eating” because he cannot eat enough to sustain himself. That is why he has the feeding tube in his stomach. He eats lunch with assistance, and must have a scribe to do any writing during his classes. He also requires help anytime he needs to get into or out of his powerchair during the school day. When school is over he has another hour on the bus to get home.
Dan has about sixty minutes to watch television, play video games or create art on the computer before his respiratory treatments begin again, and they must be repeated before he goes to bed. Dan suffers from a deep fatigue which comes from having to struggle to do much of anything. Moving, breathing, eating and even thinking require time, patience and sustained effort. His constant cough also wears him out. He is acutely aware of the difference between his life and that of his siblings; his 20-year-old brother who is away at college and has a girlfriend, his 16-year-old sister who is in high school, plays three instruments and loves marching band. He feels the pain of being different.
The last time we were in the hospital Dan told me he wasn’t sure he wanted to go on if he became really sick again. It was all too much – the constant respiratory treatments, IV’s, pills, time on the ventilator, time away from home in the hospital. We cried together in witness to all he has been through. Then life went on, as it does.
Dan used to run across the grass, laughing, with his brother and sister. He used to climb on the monkey bars at the park. He walked holding my hand. The physicians who diagnosed him prepared me for his death, for the big loss. They did not prepare me, nor could they prepare him, for the slow, incessant progression of his disease.
When he is in bed, at the end of a long day, I sit next to him and we talk. Sometimes we hold hands in the glow from his feeding pump, which hums as it pumps the feeding into his stomach. At times he shares his frustrations with his life, at others he is too tired for much talking. Before leaving his room I say, “I love you Dan, have a good rest. I’ll see you in the morning.” And he replies, “I love you too Mom, I’ll see you in the morning.”