“Am I close?” Akhil asks me as I prepare to say goodnight. He is seeking answers about a subject I know next to nothing about. My only experience with death was when I was 25 and my dad died after a two-year battle with lung cancer. I bend over and lightly kiss his forehead and reluctantly admit the words he is longing to hear, “Yes, I think it will all be over soon.” Upon hearing that, Akhil’s eyes well up with tears but he closes them quickly seeking the peace of slumber.
It has been a long battle with ALS and I think we are both weary and yet refuse to concede defeat. For six and a half years, Akhil has known his fate. For five years, he has required a caregiver as the disease gradually stripped him of his abilities. First, he needed help buttoning and zipping his clothes, then he needed help eating until little by little he needed help with everything.
As I leave Akhil in his hospital bed and settle into what was once the bed we shared, I listen for his breathing. I hear the AVAP machine forcing air in and wait for him to exhale. The oxygen machine is out in the hall feeding him through a long tube connected to his AVAP. I can hear its pump slowly circulating to generate the oxygen Akhil needs for his next breath. Each breath is slow and deliberate with a pause in between. At times, the pause is longer and I wait expectantly for the beginning of the next breath. Once I am convinced that the breaths are coming in a steady stream, I fall asleep.
When I awaken, I lie in bed for a few minutes and listen for the sounds of breathing coming from Akhil. A couple of days ago, when I awoke, I didn’t hear anything except the rush of oxygen into Akhil’s mask. I laid still waiting and wondering if this was it. It seemed like minutes passed as I had time to question how I would tell the kids, would I wake them up at this early hour to tell them or just let them sleep? Before I could determine an answer, I heard the sound I had been waiting for. Today wasn’t the day after all. Akhil will have another opportunity to ask, "Are we there yet?"