How I prayed for more time with him
"...It's hard to love
There's so much to hate
Hanging on to hope
When there is no hope to speak of
And the wounded skies above
Say it's much too late
So maybe we should all be praying for time..." - Singer and Songwriter George Michael
I was listening to this song, "Praying for Time" by George Michael, the other day for the millionth time, and although his lyrics speak to trying to understand why people in this world are so hard on each other and treat others the way that they do, I think that these specific lyrics, when taken out of context, can also be applied to ALS. A person living with ALS and their loved ones are on an emotional roller coaster ride — some days they may feel hopeful, while other days their hope is lost. And what do people living with ALS and their loved ones want besides a cure and treatments for this disease? They want more time.
Although George Michael did not die from ALS, he did pass away unexpectedly in 2016 on Christmas day. This was one of my fears the year prior as my dad laid in bed — in and out of consciousness — leading up to the day that he passed — three days after Christmas which is also today.
The week before my dad passed was an agonizing and terrifying time for me to say the least. Although I had prepared for my dad's death in the last year, when it eventually happened, it still hit like a ton of bricks.
A few days prior to my dad's passing, I was in my dad's room alone with him when he suddenly sat up and started to smile while pointing behind me and gesturing to whatever it was to "come here." I turned around and looked out his second-story window and had no idea what he was pointing at. There wasn't a bird or anything that I could see at his window. He then repeated to gesture for whatever it was to come forth before he disappointingly gestured, "forget it," laid back down, and fell asleep. This experience had never happened before during his ALS journey. To this day, I want to believe that my mom was behind me, reassuring him that she would be there to greet him when he crossed over.
As Christmas day quickly approached, and my dad was still in and out of consciousness, I remember continuously praying that he would not pass away on Christmas. Fortunately, it was not the time for him to go. On the evening of Dec. 27, Joe and I visited my dad, and he was the most lucid that we had seen him in a long time. His beloved Green Bay Packers were playing that evening, so we watched the game together. His nurse also visited to adjust his breathing mask. Because he needed a new one, she told us that she would come back to visit in the morning. We said good night to my dad and planned to see him the next day. Nearly three hours later, I receieved the dreaded call that he had passed.
Although my mind knew that with ALS and the fact that my dad had bulbar ALS — a faster moving type of ALS that immediately affected his speech, breathing, and ability to eat — he could pass at any time, I still was not ready when it happened. Yes, we had gotten our affairs in order in the past year, but emotionally, I wasn't ready for him to go.
Looking back today on the day that my dad passed, I am definitely thankful for the time that I had with him. There are so many people who have lost their dads at a young age from ALS or who lost their dads even more quickly than I did because of this devastating disease, Throughout my dad's ALS journey I had been praying for more time and had hoped for treatments to be developed and maybe even a cure, and although he is now gone, in the nine years since his passing, the good news is that there have been advancements in ALS research and hope continues to prevail. The ALS fight has not stopped and won't stop until a cure and treatments are found. My hope is that in the next nine years (or less) there won't be a need for others to write a story such as this due to the passing of a loved one from ALS.
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