What I've Learned From ALS

I started this post in August. I figured I better actually finish it today.

I have been meaning to write on this blog for months now.  I figured I better actually get it done so I can cross it off of my list of things to do.  I figured since it is ALS Awareness Month this would be the perfect time to actually write something.

First of all, I am going to give a little bit of background for how my life has been the last year.  It has definitely been a roller coaster of ups and downs.  Last year my mom was going to every doctor imaginable to try to figure out why she kept falling down and had a hard time walking.  It was very discouraging for all of us for her to go from doctor to doctor with no answers.  I honestly didn't know what ALS was until the Ice Bucket Challenge stuff last year.  After hearing about it, I kept telling my parents that maybe my mom should get checked for it.  She had been tested for it from one doctor, and he had said that wasn't it.  During that same time I was pregnant with our first baby, Olivia.  I was super sick.  I felt pretty lousy for 9 months.  (It's a good thing Livy is cute, because otherwise I may never have another baby. ;-) )  On October 7, 2014, Nicole and Jeff came over to tell me that my mom had ALS.  Andy was working that day and they didn't want me to be alone when I heard the news.  We all cried together for hours.  Apparently, for many families the diagnosis of ALS is the time to grieve, not when their loved one actually dies because it is hard to know what your loved one will go through.  When they die, it is still hard, but good to know they are no longer in pain.  The next few weeks were very hard for me emotionally.  I especially had a hard time thinking that my baby would never really know my mom.  That seemed so unfair.

Olivia was born on November 16, 2014.  My parents were both able to come and spend the day with us in the hospital.  I don't think I could have done that day without them.  They were able to give me comfort when I was so incredibly scared.  (Basically there were some complications with Livy and me.  We both are so lucky to be alive). I am pretty sure that Heavenly Father sent Olivia to us when He did because He knew we would need her.

On March 11, 2015 my father-in-law passed away in his sleep unexpectedly.  This has been very hard on my little family.  Again, Heavenly Father knew what He was doing when he sent Livy at the best time. 

On May 17, 2015 my Grandma Niederhauser passed away.  Livy is named after her and me.  Her name is Olivia Louise Rhodes.  We were so blessed because we got pictures with "The 3 Louise's" the morning of her first fall.  That is not a lucky coincidence. 

Through all of this craziness, I have learned so much!  We are truly blessed.  It has been the hardest time of my life, but I know that we are being taken care of.  The following are lessons I have learned from my mom having ALS:

1. Heavenly Father ALWAYS takes care of us. I love taking pictures.  I have thousands of pictures.  The fact that Heavenly Father let me get pictures with Livy and each of the most important people in our lives before they passed away is so important to me.  To me it shows His tenderness, love, and caring.  There are so many ways that I have seen His hand in the life of my little family, and the life of my extended family over the past year.  So many little and big miracles have happened.  So many people have listened to promptings of the Holy Ghost and helped us during our time of need.

2. Conserve Your Energy.  When we were on an Alaskan cruise with my family a couple of weeks ago, we had a little family devotional on Sunday.  My mom talked (as much as she could) about how her doctors always say to conserve your energy.  That has made me think a lot about what I spend my energy on.  Am I spending my time holding grudges or being frustrated?  Am I spending my time enjoying my family?  Energy is precious.  Moments don't last forever.  I am working hard to remember each day to try to be my best me and to be grateful for the blessings I have each day.  I am a very blessed person, so I have been trying to dwell on those blessings. I am trying to spend my time doing things that really matter and make me the best I can be.  I still have many ways to improve, but I am trying.

3. God gave us family to help us become what He wants us to be (thank you Primary for teaching me that song).  It has amazed me the things that we have been able to get through.  It amazes me the lessons that I learn from my family each day.  I have learned so much from my mom and dad and their faithfulness.  They are seriously pillars of strength.  Two days after my father-in-law passed away, I called my mom and cried and cried.  I told her that I couldn't do all of this.  I couldn't handle losing him and then her in such a close time period and when they were both so young.  I think of what she said all of the time, "You don't have a choice.  You have to do this."  Then she went on to tell me about how Heavenly Father has always taken care of us, so He isn't going to stop now.  I think of all of the lessons I continually learn from Olivia.  I often call my parents and apologize for things that I put them through that I didn't realize until I became a mom myself. 

4. Heavenly Father hears our prayers.  There have been so many days where I have told Heavenly Father that I needed Him to take over because I didn't have the strength to keep going.  Always, always, always, He takes care of me.  I always thought people were just being nice when they said they could feel others prayers for them.  I never understood it before.  I can honestly say I often feel like our family has a bubble or a shield of protection and comfort from others prayers.  It is AMAZING!  People often ask how I can handle everything I am going through so well (if only they really knew.....ha ha!) it is honestly the prayers of others that have made life okay. THANK YOU for your prayers and thoughts!  It makes all of the difference.

5.  People are good.  There is so much goodness in the world! My parents have had so many people reach out and bless their lives.  Their ward remodeled their house to make it wheelchair accessible for them.  How AMAZING is that? !  They constantly have people bringing meals, flowers, and cards to them.  My mom has even had a few people make her quilts because she gets cold so easily now. They love the visits and the thoughtfulness.  It is so humbling to see and hear about all that is done for them.  It makes me want to be better.  I also feel like I have been well taken care of.  I have also received flowers and cards from friends and family. One friend even mailed me Little Debbie's Cosmic Brownies just to brighten my day because she knew they are my favorite.  Seriously, stuff like this happens to us all of the time.  We are so blessed! 

I am not scared about where my mom will go when she passes away.  I know that she will be surrounded and embraced by loved ones and that she will be well taken care of.  I know she will do her best to take care of me and my family too, just like she has always done.  I am so scared though, to actually have her go.  I think about it a lot.  It is very easy to let bitter feelings come when I think about it too much.  28 years old seems too young to lose my mom.  I feel like I still have so much I need her for!  I have so much to learn from her still.  I am often envious of people who are in their 60's or 70's when their mom's die.  It seems so unfair.  When I start feeling those feelings, I think about all of the people I know who didn't get to know their mom.  I am so blessed!  I got to have at least 28 years with my mom.  I am amazed by all that she has taught me (and still teaches me) in that time.  I feel like I know how to do a lot because of my mom.  I don't remember a time in my life where my mom wasn't teaching me how to do something.  I can cook, sew, crochet, quilt, can, garden, mow the lawn (my mom always did it...so it never seemed like a man's job to me), do crafts, read, write, share my feelings, talk a lot, etc. because of my mom.  Some people never get to have that privilege. I am so blessed. 

So even though this has been the hardest time of my life, I know that this is all part of Heavenly Father's plan and that I have learned things and grown in ways that would have not been possible without this trial.  I am still not grateful for it, nor do I think I will ever be, but I am grateful that Heavenly Father is helping me to make it through.  I am grateful He is taking care of us, carrying us through.

Relief Society Lesson - Jan 3, 2016

     A few weeks ago, I was asked to participate in the Relief Society lesson on January 3rd. Of course, I didn't want to. I cry very easily these days, and I can't speak well enough for anyone to understand, but I couldn't say no. Partly because I have a computer that can speak for me, partly because I knew Alan would help me, but mostly because I knew that Heavenly Father needed to be thanked publicly for the many miracles He has performed for our family. The people I go to church with have done so much to help us! They have been the answer to so many prayers! I felt like this would be one way to try to express my appreciation.
     It was even harder than I thought! (That is saying a lot because I expected it to be hard.) I just cried and cried. One good thing about having a computer talk for you is that you can cry, and it doesn't know or care! :)
     We started out the lesson with Alan explaining what ALS is and how it has affected me. I no longer have the muscles necessary to move my legs or hands. My voice is mostly gone. When I laugh, it comes out really loud. I can still move my head, and most importantly, I can still think. My brain works as well as it ever has. I am so thankful for that!
     We told about a conversation I had with a friend in the hallway at school shortly after I was diagnosed. We became friends when I taught her youngest son in second grade five years earlier. Her husband had gone to high school with Alan years ago. He now had cancer, and we knew he wouldn't live much longer. As we visited, both of us tried hard not to cry. I asked her a question that I would never have dared ask if I hadn't been told that I had a terminal disease. I asked her to please tell me something positive about knowing you are going to die.
     She thought for awhile, and gave me a profound answer. She said that it gives you time to wrap up loose ends. It lets you finish things. She said that everyone doesn't have the blessing of knowing that their time is running out.
     After that conversation, I decided that I needed to come up with specific goals that I wanted to accomplish in the time I have left. They are :
1. Spend as much time as possible with family.
2. Leave as much of a written legacy as possible.
3. Prepare to meet God.

     Alan explained how we had been fortunate to spend a lot of time with our family in the past several months.  We truly feel our family has grown spiritually as we have spent time together.
     We have worked hard on many projects which we hope will leave a written legacy for our family and others.  One example of this:
     We have a dear friend, Kathleen Bagley, who taught our oldest three children in fourth grade several years ago. She has been coming over to visit once or twice a week. She came up with the idea for me to write an A to Z book, with thoughts and memories for each letter of the alphabet.  We did a book for each of our children and Alan. I typed things up with my eyes. Everyone else did the harder parts like printing, cutting, and pasting.
     Alan shared the O and P sections of the book with the ladies in Relief Society:
     Outstanding Attitude 

     When I first started noticing that something was wrong with my legs, I decided I needed to be as strong spiritually as I could be. I was reading The Book of Mormon each day, but I made a goal to read a conference talk each day, too. I came across President Uchtdorf’s talk. He gave it in April of 2014. It really touched my heart! He said that people who are going through trials can handle them best if they focus on their blessings. I prayed for help doing that. That prayer has certainly been answered!

      I also have been blessed to hear a talk given by Elder Holland titled, “Lessons from Liberty Jail.” In it, he talks about the conditions in Liberty Jail. Whenever I am tempted to feel sorry for myself because of my ALS, I go to Liberty Jail in my mind. I think of what it takes for me to go to the bathroom now: Dad gets my wheelchair in the right spot, and pulls me up to stand on my feet. Then he puts my hands around the vertical bar. After that, he gets me on the toilet. When I compare that to Liberty Jail, I think I have it really good. Can you imagine living in one big room with absolutely no privacy? Just where did they go to the bathroom? Was there water to wash their hands? My mind asks lots of questions and I have come up with how good I have it.

     I also remember a talk that I heard from a man years ago. He wrote Seven Years in Hanoi. He had been captured during the Vietnam War, and spent seven years as a prison of war! He described the place he lived: the floor was dirt. The only light that he had came through places where the wooden boards didn’t meet. As he told us his story, he talked about how many people died. He said that when people stopped having hope, they lost the will to live. Hanoi is another place my mind visits if I am tempted to get discouraged.
     Prayer and Scripture Study 
     Grandma Willis taught us that God is a Dear Friend who will help us and take care of us. Praying was as much a part of life as eating is. By the time we started having you kids, we knew that the only way we could make it as parents is to pray and pray! Dad and I always prayed together every morning and evening. Then you kids and I would say a prayer on the way to school At night, we always said family prayer after we read scriptures together. God has answered so many prayers and performed so many miracles in our behalf!
      One way he can answer our prayers and comfort our hearts is when we read the scriptures. I don’t know how it works, but there have been times I thought my heart was broken and I’d never feel happy again. Then I’ve turned to the scriptures, immersed myself in them, and been healed! It has been amazing to me. When Grandma Willis died, I turned to the end of The Book of Mormon and read Moroni’s writing. That was incredible comfort to me. One of our Stake Presidencies told us that two plus two equals four: two prayers and two pages of scriptures every day will make a family that will last forever! I hope you will make that a goal for your family.

      Our testimonies have been strengthened as we have faced this trial together.  Alan said to the sisters, "No one needs to feel sorry for us.  The blessings we have received have far out weighed the trials we have faced.  We are truly thankful to Heavenly Father.  He blesses us more and more each day.  We know so many of you are praying for us and we know Heavenly Father is hearing and answering your prayers by showering the blessings upon us."

 

     I then shared the following experience and insight:

     Lake Tahoe-July 2015

     We had been careful to plan things out ahead of time.  We knew getting me onto the beach would be difficult.  Roberta worked hard to put a second wheelchair in her car and bring it clear from Millville.  We knew my 360 pound wheelchair would never make it through the sand.

     Alan parked the car, I got out and Alan transferred me in to Roberta’s light weight wheelchair.  Then he pushed me over the asphalt parking lot.

     The plan was for one person to hold the wheelchair on the back and for two people to hold each side by my legs.  As I turned and saw the beach an unexpected feeling of hopelessness and despair overcame my entire body.  I would never run on the beach again.  I would never swim in the water that I loved so much.  I would never lay on the sand.

      I closed my eyes to try to gain my composure.  I didn’t want to cry.  As my ALS has progressed, my crying has gotten louder and more embarrassing.  Just then I realized I was being carried.  Bryan, Nathan, and Cory were all lifting me in the wheelchair and taking me across the sand to the rest of the family that was already there.  Just as suddenly as the feelings of hopelessness and despair had come, new feelings of gratitude and love engulfed me.  I realized how blessed I am to have a brother and nephews who love me enough to do for me what I cannot do for myself.  Without that kind of help, I would have no quality of life.  I could be homebound and unable to do anything.

     I cried all the way to the beach.  How fortunate I am to have love and help.

     As I was thinking about it the next day, I realized that each of us is in a similar situation to mine.  My trial in life right now is physical.  I didn’t do anything to bring it on; it is just the nature of ALS.  However each of us have a spiritual handicap.  None of us is perfect.  It is the nature of life.  There are times when we are fill with despair and hopelessness.  We want to get back to our Heavenly Father, but we don’t have the ability on our own.  We cannot get there without help.  We have a Father and a Brother who love us enough to do for us what we cannot do for ourselves.  If we will ask them, they will carry us through our trials.  They will help us when we are unable to help ourselves. 

     We should have deep feelings of love and gratitude for the Atonement.  Because of that, Jesus has felt any sorrow or pain that we feel.  He knows what to do to carry us through anything.

     I then ended the lesson by relaying the following:

     I would like to thank all of you for everything you have done for us. I remember praying, " Heavenly Father, I don't know how to do this because I have never done it before. Please help us to do it right. " After that, people started coming over, or calling on the phone. They would offer specific help, and we would think , " That's a very good idea." Then we would thank Heavenly Father for taking such good care of us.
      One example of that is the bathroom in our home. When I was still able to ride on a scooter, I was still teaching school, so that was taking a lot of my energy. Bishop Page and Bishop Fowers started worrying about a motorized wheelchair fitting through our bathroom door. They came over at different times, but they came up with a plan to remodel two bedrooms and our bathroom to make them accessible. We moved into a motel for fifteen days, while the people in this ward worked hard to remodel our home. I have often wondered whether that helped us more physically or emotionally. There is no way I could still be able to live at home without those changes, but the love we have felt from you has been a massive help, too.!
      We thank you for every prayer you have offered in our behalf! Those prayers have carried us! We appreciate every visit, every meal, every bouquet of flowers and every other act of kindness. There is no way to adequately thank you or Heavenly Father, but please know that we appreciate you with every inch of our hearts! We love you.

 

     After we had given this part of the lesson, we worried about people who still needed to be thanked.  We are putting this on the blog, hoping to reach anyone who was not in attendance at this Relief Society meeting.  We really do appreciate everyone who has done so much to help us during this challenging time.  We love you!!