Monday, April 03, 2017

Twelve Days

Sadly, my dad lost his battle with ALS on March 23rd. He passed not long after midnight. The day still felt like the night before, actually. I had just rested my head on my pillow minutes before the call came in. 

That same night, I spoke to my Mom and she thought that he was running out of time. Even so, she thought perhaps days or weeks. His symptoms could be so iffy. He'd have near-death symptoms and then he'd seem to bounce back. They talk about patients with ALS having a final burst of energy. Dad's lasted for days. A fraction of his voice even came back temporarily! It was a beautiful thing!

After my phone call with my Mom, I laid in my husbands arms and cried that I did not want my dad to die. I gathered a few things and told him I needed to do laundry and pack my go-bag again the next morning. Three hours later, he was gone, just like that. :'( 

I was supposed to see my dad in three days. Instead, we rushed up there and spent time with him before they collected his gift. I say 'gift' because 'body' is too hard yet. My dad gave the ultimate gift... donated himself to medical study, in the hopes that his gift would help further understanding of ALS. 

ALS/Lou Gherig's is a brutal disease. It is ravenous; eating its way through the lives of so many people and families. My dad lived three months tend days to the date from when he was diagnosed. :'( We only knew how seriously bad his health was becoming two or three months before that when we so earnestly sought to see what plagued him. 

I am struggling, I won't lie. I am okay with the fact that my sweet daddy went to Heaven. I can even bear to live without him, when I think of 'him' as the man who was riddled with disease and bed-ridden. I would never wish him back into the hellish reality he was living. It takes my breath away to think of him as his true self.

I cannot bear the fact that this beloved man is now just memories and photos. :'( :'( :'( :'( My cousin made a lovely tribute video for his celebration of life which I both cherish and cannot watch without falling completely apart. Thirty-five years, I have felt his love. Thirty-five years of photos that both stir and break my heart! 

People tell me often that you never get over the death of a loved one. I am sure that this is true. I am not over the loss of my children. I still miss my Gramma Great. My mind cannot always comprehend that my daddy is now in that short list of people who have left us behind. :'( :'( :'( 

It has been twelve days since my dad went to the Lord. Those first seven days were so busy that I hardly had time to think. On day seven, it began to feel as though we had gone through a war zone. Even then, we had to finish getting ready for my dad's service and my mother's move to my sister's house. Day ten was the celebration/memorial service. That was a long, hard day but I was able to (mostly) put the pain in a box and celebrate my dad. 

Day eleven, yesterday, was moving day for my mom. By the end of the day, it was all done... literally. My dad passed, his life ended for real, on paper, and officially with every connection he had in this world. My mom's life was taken down, packed up, loaded up, and shipped off. Once she was gone, the state felt so lonely. It was like losing both parents in different ways. I crashed *hard* the rest of the day.

Today, day twelve, I pick myself back up again. The girls and I resume life in the 'new normal'. We will still cry when the pain strikes, of course, but now we are done with everything Dad's death brought to us. We are done with everything but feeling it and continuing to try to find ways to support my dear mom.

ALS is devastating. Rapid decline ALS forever ended a very special part of my life. More research is needed. More information is needed. More awareness is needed. More support is needed. A couple of years ago, my entire exposure was the ice bucket challenge. Today, I am fatherless because of ALS. I am forever changed.

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