Indiana Alley

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.”

—Ann Landers

A wise parent humors the desire for independent action, so as to become the friend and advisor when his absolute rule shall cease.”

—Elizabeth Gaskell

Merry Christmas 2020

In my mind today I have been trying so hard to find the Joy. The pandemic has driven everyone into their tightest circles possible. In my family, the circle is huge. The times of huge gatherings was not to be had this year. From March until who knows, we will miss very many wonderful gatherings or take a chance. The fragility of our health makes it harder than ever because we want to be with all of our loved ones. If I sat in my wheelchair and dwelled on this everyday, I don’t think I would have any tears left. I believe I would cry myself empty. That is why I reach for my devotionals each day. I try to feed my mind with good words and directions before I begin each day. Some days you just have to cuss. I hear you back row; you are laughing. After losing it, I turn back and ask for forgiveness. The tensions inside of our homes is real. Even in our most tenuous moments there is joy! Don’t believe me back row? Let’s take it to trial. You be the judge!


Exhibit A
Last year I got a new wheelchair. It was to be driven by my head and neck. I didn’t realize that my neck muscles would begin to atrophy before I ever mastered it. So, it sat in the corner in my room broken after I had run into a car outside and broken the drive device. The new chair sat there for a year, and I continued to drive the old one. My left arm is now weakening and I am barely able to drive with a joystick but I was still able to tootle around especially outside. Next, the batteries were running out on the old wheelchair that I was using and I was forced to contact the wheelchair people. They came to get the wheelchair and put many adaptations on it for me. After three more with months of waiting, it arrived! I was so excited to drive again without worrying about the battery dying. My dogs were getting seriously mad at me because I could not roll with them. The eye gaze system was a bit jerky but I thought hey I can do this. I did tootle a bit and then I was waiting for a day to go outside and practice. Driving with your eyes inside takes a lot of skill especially whenever you have an s curve on the way into the bedroom. Don’t you remember whenever you were learning to drive? They take you to big parking lots and let you practice. I was bound and determined to learn to drive this wheelchair. My son and I headed outside. I began to drive it down the ramp but whenever I got out of the garage it died. It would not work. It kept saying no eyes detected! We sat out there for 2 hours trying to figure out why the wheelchair would not work. It had to be me or some wire that wasn’t attached correctly. I did hit a few doors and walls in the house. Whenever we gave up and came in, it worked in the house. I had suggested that maybe the sunlight was interfering with it. So I called the technology people that created the eye gaze and found out that I was given the cheapest version available. Insurance did not think it was necessary for me to be outside driving on my own. Folks, I am not dead yet. As long as I am breathing, I want to go outside it doesn’t matter if it is 0° or 110°. This girl loves outside. It’s where I find most of my joy. It is where God meets me. After several meltdowns and conversations with insurance and technology people I believe they have approved the eye gaze that works outside as well as inside. What I had discovered was unless you have an advocate you are your own. Where is the joy? The joy was I was able to advocate for myself. The joy was now I know even more how important it is to donate to the ALS chapter because they are huge advocates of getting us what we need. The virtual race that we had this year made it possible to give a nice donation to the ALS chapter. Joy abounds.  I can call at any time and they are able and willing to help me live with ALS. 
Verdict: Help those who have no advocate. I guarantee you you will find joy!


Exhibit B
If you know me, You know I am an absolute nut for Christmas! I always have been. Did I always get everything I wanted for Christmas as a child? Never. But that’s okay. It was about the songs and the feeling that Christmas gives that was always what I loved. Let us not forget the awesome claymation cartoons. I was born at the right time. I still torture my children to this day and grandchildren with watching those antique shows together. I just drive my family crazy. Lists. I am list maker. Even if I cannot physically write anymore, I make lists in my head and occasionally voice to text them like I am now. I shoot those list out to my poor children. The ones that are trapped with me in this house. That’s how I think they feel sometimes! They then begin to try to help. This year the list was completely ignored. The kids started decorating without any attention given to the list. So cue the meltdown. I asked them what were they doing? Why were they dragging out all this stuff but I actually said junk? I asked desperately, “Did you even read the list?” The list was way simpler than what was going on. They were dragging out things I had not seen in years. The house was a wreck. I was a wreck. They were frazzled. It was not a beautiful Christmas scene from a Hallmark movie at all. After we all got over it (10 days later) the decorating began. They tried to back up and punt. I had only planned on one tree this year. Yes, I know it’s horrible that I have more than one tree and I am stuck in a wheelchair and I still want those trees up. The list that I had given them explicitly said one tree. I wanted the Nativity tree because that is what this time of year is really all about anyway. It was like one of those quizzes your teacher gives you and then when you get to the end it says put your name at the top and you will get a 100. Don’t worry about answering the questions. If that had been done, lots less crying and gnashing of teeth would have happened while decorating. The whole house almost came down whenever they found out I had nixed the memory tree. Needless to say, decorating is done and there are three trees up. The tree that means the most to my children is the one that is full of memories. Note to self! It is the one that has traveled with us through our lives together. It has all sorts of ornaments from friends and school crafts. It carries with it people and friends who are no longer with us. The nativity tree used to be in the foyer. The memory tree was always in the living room. It had lived with us. It was the staple tree from the very beginning. This year I flipped them. After all of the dust settled, my sweet husband who never says anything says, “I can’t believe you picked the Nativity tree. Didn’t you realize the children would be upset? The memory tree is also my favorite. It should be in the living room.” 
Verdict: Don’t assume that others love the cherish same things that you do even if you live in the same household. Be considerate of their time and feelings regardless if there is a list. My list caused so much grief and wasted so much time. I should have just let them decorate the way they wanted. It will be theirs to do one day anyway. After one nasty exchange, I suddenly realized I was being over zealous with the trappings of Christmas. I felt just like the Grinch before he had an epiphany. It really only matters that we are here and we will be able to make more memories God willing. That’s it. You don’t need anything: a tree, gifts, or extravagance of any kind to find the Joy of Christmas.


Bed sores (another gift from being in a wheelchair that is stationary,) uti infections, and beyond and I could never forget to mention the near death experiences of choking. Yes we have been through a lot of falling down with our health lately. The pandemic makes it so much harder to look at the bright side of things. If this is how you feel, it is time to flip the script. You need to look around yourself and see all of those blessings. Look around and find people who need blessings. Now that you have opened your eyes, you need to get busy. You have so many gifts of joy to unwrap this advent. Here are some of the gifts I have received: fresh eggs from a friend who has a farm each Saturday delivered straight to my mailbox or my garage, surprise drop offs of pumpkin bread and pies, a dear friend who is very sick made the dressing for my Christmas meal that tastes so much like my mother’s, my children trying to make me want to live longer, my grandson who has ripped every vehicle off of every tree with a few other ornaments, a window visit from my grand girls that I have not seen in months, and beautiful Christmas cards from friends that I never knew I would be able to hear from again. These are just a few of the gifts from people who just love us. That is complete Joy. God speaks to us every single day not just Christmas. He is in the little birds that sit by my window and pick berries. He is in the squirrels that skitter and fight and play around my window everyday. He is in the playful dogs that come to my window wanting to know why I am not out there with them. He is in my children that desperately try to make everything okay. He is in the sweet husband that guards his little family so well even though he himself has lost so much. He is in the bulbs that I saved and are now beginning to sprout in my window. Every message he gives me is of LOVE and a promise of resurrection. I see things sometimes that I know are just for me from God. Students there is Joy whether we open our eyes to see it or not. What are you waiting for? Find your joy!


Merry Christmas!
Sarah Anderson Alley
Sal the ALS Gal


Quotes for the Season:
“Cover them,” he says. “I do not wish to see them.” Ebenezer Scrooge
“Bring them here,” He says. “I wish to see them.” Jesus Christ
Do you see the difference? Scrooge did not want to see the poor of the world. He did not want to feel responsible or guilty or worse not to feel anything. To you much that is given… always remember that. Jesus said bring those to me who are on the fringes of life. 


Religion that is pure and undefiled before God the Father is this:  to visit orphans and widows in their affliction, and to keep oneself unstained from the world. James 1:27 
 

Thanksgiving 2020

In my mind today, I have had such strong emotions this November. Novembers are always hard for us since our son left the Earth. It was 10 years this year. So so many have left us. It is our job to continue on and to spread love and unselfish acts. We have been isolated because of our health. Everything is different this year because of the pandemic. This was the first year we did not get to see our grand girls. This was the first year that we didn’t have 50 plus people to share a family meal. Our wonderful weekends at church and with family have been thwarted since March. There has just been so much grief in our world. My heart cannot take it.
Yesterday at the end of November in my readings I was reminded to stop, pray, and hope for better times on this Earth. Although everything has seemed so sad and dreary we have to fight through the dark times. We have to search for the good even if it is just thru our own window. There is so much good still to be done; there is still so much good in our lives although we often overlook it. I am thankful for the blessings of getting to see my husband and children every day. I am grateful that my youngest grandson is able to be with me so so much because his parents are having to work. It brings so much light and joy to us. It makes me realize that our jobs during this time maybe just simply to love each other I mean really love each other. Not post a pic on social media to show all the wonderful love but really really give that wonderful love even if you don’t get a picture. Be in the moment. I know I have always been a little bit nutty but I tried to imprint memories in my mind as I am having them. There is a treasure trove to be revisited. As I look out the big window with my grandson and see all of the beauty of the birds and the squirrels playing, I know there is no place that I should be but with him. I see that real love when he falls asleep on his Uncle Ben because Uncle Ben has the best hugs. I see that love when Abbey has to say “No!” I also see that love when he goes to her for his essential needs, snacks! I see that love when he sings along with us or adds a new word. I see real love when he jumps up in Poppy’s chair and shares his cereal with his coffee in the afternoons just like my grand girls always did. I hear that love when I hear my daughter is singing for her classes upstairs. I feel that love especially when my family has to feed me and bathe me.Even if I am a guinea pig for all of my daughters beauty stuff! I have just not ever been a girly girl or a diva I guess. She loves it and I love that she wants to keep me healthy.  I even see that kind of love when the cat will jump on my feet and just lay there for hours. ALS continues to take but I refuse to give it my joy. My joy -o- meter has been up and down like the stock market but when I open my devotionals and all of my readings I find the strength to fight. Stop, pray, and hope. My hope is way bigger than a mustard seed and I know where my Joy comes from and that’s all that I need. Last but not least, I am thankful for you. For loving and supporting me and this fight, I can never repay all of the kindness that surrounds me. I can only say, thanks be to God.
Sarah Anderson AlleySal the Thankful Gal
Quotes for the Day:
Indeed, this life is a test. It is a test of many things – of our convictions and priorities, our faith and our faithfulness, our patience and our resilience, and in the end, our ultimate desires.Sherri L. Dew
Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship.Buddha
Some people are always grumbling because roses have thorns; I am thankful that thorns have roses.Alphonse Karr

Aches and Pains

Morning, noon, and night I cry out in my distress, and the Lord hears my voice. —Psalm 55: 17 (NLT)

Today is one of my pity party days. My body is crying out in distress. I think every inch of me has an ache. The super, quick road trip to Vanderbilt in Nashville and back is the worst. My body is breaking down and I have to face it. By the time I arrive home, I’m on the brink of a mental breakdown, sore, and dehydrated. No fun. So, I cry out in distress and He hears me.

Today is the Assumption of Mary on the Catholic calendar. The short version is that Catholics and some other denominations believe that Mary was welcomed in to heaven upon the end of her earthly life. If anyone should get a “fast pass” to heaven, it should definitely be Mary. We all have to die to our earthly life. Reading about this today made me long for heaven. It made me long for an end of my earthly distress. Then I remember I’m not quite finished regardless of my aches and pains. So I put it on God’s shoulders and put on my big girl dipe. I begin to pray for those who just lost their daughter in a tragic car accident and remember her grieving friends. I pray for a father who left for heaven too soon leaving behind his daughters and parents. I pray for a friend who lost her beloved father. I look around and realize my earthly chapter is far from over. I need to cry out and move forward with the gift of life I still have. There is so much left to do. Will you join me?

Sarah Anderson Alley
Sal the Aches and Pains Gal

Dedicated to Cowboy, Alaina, and Clint who started their next chapter and for the hearts of those left here.

“The pain of parting is nothing to the joy of meeting again.”
Charles Dickens