In my mind, I have been very busy. So has my sweet little family because of me. It is so hard to be a caregiver. I think it is the hardest thing ever. It becomes very tenuous at times whenever those closest to me become exhausted and even hurt because of my ALS adventure.
This past week has been a whirlwind. Lots of jobs to do and lots of places to go to advocate for the good. I absolutely wear my family out. My son who is my main caregiver had his back go out. My daughter who has been my main caregiver as well during the pandemic and the summer has gone to a summer adventure archaeological dig for school. My poor husband has to be on continuous oxygen all the time. His health is just as fragile as mine. I really cannot write this crazy stuff that happens to us. My other son has two little ones and his life is very wild trying to build a family and work. This is why I have some days that are just crying days.
I cry because my children should not have to do this for me. Don’t get me wrong I am so very grateful for them. I do not want to hurt them and that’s what it feels like on these crying days. My sweet sister has had to come and try to fill in the empty spaces but this is not fair for her. She just began her season of retirement. ALS just plainly sucks, that’s all it is in a nutshell. The days that I watch my family suffer because of me hurts me more than anything. I have to cry through the tears just to write this stuff. It hurts so, so much in my heart and in my soul. Mother’s are supposed to take care of their children, not the other way around. I truly hate that my family has drawn the short straw.
As we hurriedly tried to get everything together for my last little bird to head out for her archaeological adventure, I found myself having little spells of grief and crying. She and I have this secret club; it is the Bug Club. We had so many days together this summer working at the library with children that we didn’t have extra special bug-to-bug time a lot. We shared ourselves with the community and at the end of the summer I found myself craving for just a little more bug to bug time. Our last little bug adventure was to Charlene’s Tea Room. The next day I had Bunco with the Bunco girls. We rushed out after Bunco so I could go to church with her that evening. She was not going to be able to go to Sunday services because of leaving on the archaeological adventure AKA Indiana Alley. Everything was just going by at light speed. That’s how life is. If you do not enjoy the journey, you end up a very sad person. I had enjoyed this journey and I was wanting more but I knew this season was over. That’s why I was flooded with so many tears. When she left I became almost inconsolable. Unbeknownst to me she had to come back in for something and she heard me crying. She came around the corner and said, “What’s going on with you?” I just kept blubbering and crying. She washed my face, cleaned out my snoot, and let me blow my nose. She was very adult-like and told me, “You’ve got to cut this out. I’m not going to be here to wipe your nose again for a while. Big bug you need to strengthen up.” I was able to suck it up buttercup after that. God gave me a little bit of fortitude to reassure her and my little bird was off again.
I didn’t want her to stay with me, that was not why I was such a mess emotionally. I just knew nothing gold could really stay. Remember that quote students? It was the book I did at the first of the year almost every year: The Outsiders. It’s so true. Life is an ebb and flow of good times and bad and a whole lot in between. The important thing is to embrace those golden times. If you didn’t embrace them then you would never cry when they were over. Students, be in the moment of your life. It was our essential rule number 55, carpe diem. This is life. This is my life. This is your life. If you do not treasure your moments, then you are missing out on so much during your earthly journey. No day is ever promised so please get out and enjoy your day. It may be the last one that you get. Yes back row, it’s homework!
Sal the Carpe Diem Gal
Sarah Anderson Alley
Quotes of the Day:
“Give the ones you love wings to fly, roots to come back and reasons to stay.”
—The Dalai Lama
“It is not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.”
A wise parent humors the desire for independent action, so as to become the friend and advisor when his absolute rule shall cease.”