In my mind today I’m exhausted. I’ve been jetting all over in my wheelchair since Sunday. I may be Sal the ALS Gal but I’m not giving in until I burn completely out. I hear my loved ones and even the back row saying, “Slow down Ms. Alley. You look so tired. Your breathing is labored. You’re swelling all over. We need you here longer.” Yes, longer is what we want especially in dire situations.
Sunday was mass, meal with the family, watching ball games, and reading. Monday was meetings of the Tween bookclub and race organizers gathering to tweak the Autumn March for ALS. Tuesday was soliciting money and prizes for the Autumn March for ALS 2017. Wednesday was visiting the ALS Clinic and my sweet great nephew at Le Bonheur who is fighting for longer, too. So, today I really need to rest and try to get my fluid levels in check. It gives me a chance to read, reflect, and write. And this feeds my soul and gives me life. Longer.
Reading about prayers this morning and how some are answered in the way we want and when other prayers are answered differently, we feel jilted. Yesterday at the ALS Clinic I heard the lock click and open slightly. People who know me and who have loved ones affected by ALS have been pleading for help with this horrible disease have an option to help their loved ones. It’s the first drug offered in 20 years. The neurologist yesterday asked would I consider trying a new infusion drug that has become available FDA approved. It is Radicava. It has shown to give some improvements in mobility and slowed the progression of ability loss. If you’ve seen me dining out with my family or friends, I know you’ve noticed eating is very hard. My husband and friends are starting to help and feed me. My arms are becoming too atrophied and very tired to feed myself. As an example, this drug could slightly could improve my strength and slow the deterioration. My weakened diaphragm and pulmonary function can be improved and sustained. It’s an answered prayer or a door opened according to my readings today. My children are young and I know they need me here. Longer.
After receiving this news, I signed or scratched my name on the paperwork. We headed across town to see my great nephew, niece, and sister. When I saw Kyler lying there broken, tears emerged. I would have given the rest of my vitality and allow him to jump up and start asking his crazy questions, jump on my wheelchair wanting to go on an adventure, roll in the yard with his dogs, or start a burn pile with his Peepaw Butch. He laid still breathing. I only wanted to hold his hand and pray.
The warmth from his little fingers gave me hope of better days. My eyes closed as I prayed searching for the Holy Spirit to fill us. I’m being bold and I’m asking for that high spirited, handsome young man to wake up and say, “Momma, Nanna what’s going on? I’m ready to go play. Hey Nonna, am I going be getting off the bus at your house this week? Dad, thanks for being here. Kenny, let’s go fishing! Misty, I’m ready to see Lex and play remote control cars with Uncle Josh and the boys. Let me hold Avy Lynn and play with Audrey Belle and Andi Kate today. Can I PLEEEESE stay with Nanna tonight? Momma, can you rock me?” Yes, I know prayers can be answered. I know Kyler is strong and a fighter. I believe in miracles.
As one prayer is being answered for Sal the ALS Gal, I’m not giving up on our Miracle for Kyler. He’s stable but critical. The journey to complete recovery may be long or short. There are so, so many on deathbeds, have terminal illnesses or chronic diseases, and mental illnesses from schizophrenia to addictions that need to be here longer for their loved ones. Longer so they can love them and seek a miracle. Don’t be shy. Seek and you can find a miracle. Ask and the door can be opened. Pray for longer.
Sarah Anderson Alley
Dedicated to the Wesley Neurology Clinic, Kyler Doolin, and all of us praying for longer.
Quotes of the Day:
Jesus said to his disciples: “Suppose one of you has a friend to whom he goes at midnight and says, ‘Friend, lend me three loaves of bread, for a friend of mine has arrived at my house from a journey and I have nothing to offer him,’ and he says in reply from within, ‘Do not bother me; the door has already been locked and my children and I are already in bed. I cannot get up to give you anything.’ I tell you, if he does not get up to give him the loaves because of their friendship, he will get up to give him whatever he needs because of his persistence.
“And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. What father among you would hand his son a snake when he asks for a fish? Or hand him a scorpion when he asks for an egg? If you then, who are wicked, know how to give good gifts to your children, how much more will the Father in heaven give the Holy Spirit to those who ask him?”
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein
“Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”