As their father fights to live, my children and I learn how to grieve.
One night last fall, as I sat in bed with my 9-year-old son, Cohen, he looked up at me through tears and asked, “Do you think Daddy will have a long life or a short life?”
It was a big question from a little boy, but not an unexpected one.
Two years ago, my husband, Chris, was diagnosed with the progressive neurodegenerative disease amyotrophic lateral sclerosis, or A.L.S. Doctors said he had six to 12 months to live. He was 37 at the time.
Thanks to a promising clinical trial Chris is still very much alive, but the experimental medicine injected into his spine every four weeks has not worked perfectly. He first lost the use of his dominant hand, and then, after nine months of no disease progression, his face started to change. What began as a slightly lopsided smile snowballed into almost total atrophy of his facial muscles. His lips weakened, so he could no longer purse them together to make consonant sounds or to kiss us. Then his swallowing muscles deteriorated, and he began choking on his food.
It was terrifying for all of us. For Cohen, the panic was palpable. His heart would race. He would sob and sweat and look at me desperately for reassurance that his dad was not going to choke and die. Our 6-year-old daughter, Willa, would reassure her brother, and herself, with a mantra we created for these episodes: “It’s OK, Cohen. Remember, coughing is not choking.”
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