I went to the pulmonologist yesterday, and it was mostly good news. My diaphram is still down low, my inspiratory and expiratory force is still ten points above ventilator consideration, my blood oxygen level is fine (96%), and my forced vital capacity hasn't changed in three months. So all that news was well received. But that is not what motivated this entry.

It happened that my electric wheelchair was down for the count yesterday—bad batteries. So I was in the front seat when we stopped by to pick up the twins on the way home from my appointment. Ryan was the first into the car, and after the greeting, he took stock of the situation. Dad is in the front seat. Not in his wheelchair in the back. Whereupon he asked, "Can you walk now?" I shook my head as I retraced his mental steps that led up to his question.

"Oh, then why are you in the front?" he asked.

It took a few attempts before he could understand my speech well enough to glean my explanation. Then Patrick made his entrance, and he immediately asked, "Can you walk now?"

As Ryan bruited my explanation to Pat, I again marveled at the indiscrimate cruelty of my disease. My sons remember me wrestling with them, playing with them. Chasing them. Dancing with them. Being a dad for them. Not just their perception of what a dad is, but mine too. They saw me in the front seat and for a brief moment their wish was granted; their prayers had been answered. It only took a shake of my head to reduce their excitement and anticipation to smoldering disappointment. My unwitting deception had suckered them both. Of course, they just picked themselves up, dusted themselves off, and were off and running again, as five year-olds are wont to do. But their dejection was amplified in my mind, resonating with my own sorrow and disappointment.

But it also threw gasoline on the fire of my resolve to outlive this disease. True, ALS has taken a number of things from me: sports, walking, piano skills, eating. But even if I never get to do any of those things again, I'd call it even if I were just able to see my kids grow up. As my disease progresses, I begin to see how despair and frustration erode conviction and hope. But having people who love and value you is a powerful fortification. Especially people to whom you owe a responsibility. As imperfect a father as I know I am, my childrens' concern and expressions of love leave me no doubt that they would miss me terribly if I were to lose my fight.

I see this in almost every interaction I have with them. But it is punctuated at times like yesterday when I had to answer "no" to Ryan. He climbed up to the front seat, threw his arms around me, and hugged me.

Replies: 6 comments

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