As I write this, I am sitting in bed looking out the windows where there are beautiful fireworks filling the sky. In spite of the loud noise, Akhil is sound asleep in his hospital bed nearby. Our house sits on top of a hill and from our vantage point, we can see many of the neighbors’ displays as well as the ones put on in the towns across the river. It is truly spectacular. I am watching it alone this year reminiscing in my mind of barbecues on our deck and time with family and friends on previous July 4ths.
Akhil and I are approaching our own Independence Days. Akhil is surely nearing his final days. He is sleeping all but a few hours every day. His body is ravaged with battle scars and it seems incapable of healing itself. He has sores all over – one on his head from the strap of his AVAP that he wears almost constantly now, one under his nose from the AVAP mask, his feet are covered with bruises and sores from simply resting in one place for too long, the skin on his bottom has peeled away leaving a raw bloody surface that is incredibly painful to sit on and his mouth has sores where the suction tip has sucked away patches of skin as we tried to remove the mucous that had collected. Each day seems to bring on a new wound but this soldier just refuses to surrender.
I asked Akhil a couple of days ago if he felt like the end was near and he said, “No” by squeezing his eyes shut. I asked him if he WANTED the end to be near and he said, “No”. Unfortunately, regardless of what he wants, his body seems to be saying that his days are numbered. It seems to be using different means of inflicting pain in order to elicit a surrender from Akhil.
It is hard to watch someone suffer so much. It is really hard when you are the one causing the pain. Akhil defecated in his brief this morning so I had to clean him up. Normally, this is a fairly speedy process taking about fifteen minutes or less. Today, because of the condition of the skin on his bottom, it took about an hour. Part of that was because I had to proceed strategically and delicately as every touch of the skin caused it to drip bright red blood. The other reason it took so long was because I had to take breaks to regain my composure as the nausea hit me in waves when I thought about how much pain I was causing Akhil with every touch.
Soon, Akhil will be free of all this pain and suffering.
When Akhil is free, I will also gain a freedom, independent of him, no longer responsible for his care and well-being. I will miss him so much but the reality is that I have been missing parts of him over the last seven years and almost all of him for the last couple of years as ALS has taken him one piece at a time.
While I am looking forward to my independence, like all freedom, it comes with a high price paid by someone else. I am grateful to Akhil for fighting a good fight and for being a relentless soldier. He set a fine example of how to persevere even when times are tough and how to surrender to God's plan even when it is tempting to take matters into your own hands.
I want Akhil to be free of pain and suffering. One day fairly soon, we will all celebrate his freedom on HIS Independence Day.
Akhil and I are approaching our own Independence Days. Akhil is surely nearing his final days. He is sleeping all but a few hours every day. His body is ravaged with battle scars and it seems incapable of healing itself. He has sores all over – one on his head from the strap of his AVAP that he wears almost constantly now, one under his nose from the AVAP mask, his feet are covered with bruises and sores from simply resting in one place for too long, the skin on his bottom has peeled away leaving a raw bloody surface that is incredibly painful to sit on and his mouth has sores where the suction tip has sucked away patches of skin as we tried to remove the mucous that had collected. Each day seems to bring on a new wound but this soldier just refuses to surrender.
I asked Akhil a couple of days ago if he felt like the end was near and he said, “No” by squeezing his eyes shut. I asked him if he WANTED the end to be near and he said, “No”. Unfortunately, regardless of what he wants, his body seems to be saying that his days are numbered. It seems to be using different means of inflicting pain in order to elicit a surrender from Akhil.
It is hard to watch someone suffer so much. It is really hard when you are the one causing the pain. Akhil defecated in his brief this morning so I had to clean him up. Normally, this is a fairly speedy process taking about fifteen minutes or less. Today, because of the condition of the skin on his bottom, it took about an hour. Part of that was because I had to proceed strategically and delicately as every touch of the skin caused it to drip bright red blood. The other reason it took so long was because I had to take breaks to regain my composure as the nausea hit me in waves when I thought about how much pain I was causing Akhil with every touch.
Soon, Akhil will be free of all this pain and suffering.
When Akhil is free, I will also gain a freedom, independent of him, no longer responsible for his care and well-being. I will miss him so much but the reality is that I have been missing parts of him over the last seven years and almost all of him for the last couple of years as ALS has taken him one piece at a time.
While I am looking forward to my independence, like all freedom, it comes with a high price paid by someone else. I am grateful to Akhil for fighting a good fight and for being a relentless soldier. He set a fine example of how to persevere even when times are tough and how to surrender to God's plan even when it is tempting to take matters into your own hands.
I want Akhil to be free of pain and suffering. One day fairly soon, we will all celebrate his freedom on HIS Independence Day.
July 3, 2018 - Akhil loves it when the girls sing - They treated him to a few moments of ridiculousness - yes, that is a real snake wrapped around Ashley's neck... I never thought I would have a dog and certainly never a snake in my house as a pet!
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