A few years ago, I was having a hard time adjusting to some major changes that were happening in my life. I prayed and prayed, but still really struggled. Finally, a thought came into my mind. It was, "Focus on what you have." I didn't do as well as I should have following that counsel then, so I'm trying to do better now. So today, I'm going to write about some of the amazing blessings my family and I have been given:
Last Sunday, we were blessed with our fifth grandchild! Mandy's and Andy's first child had a hard getting here, and spent a couple of days in NICU, but is doing well now. She's a beautiful baby girl. She's a wonderful armful! We are so grateful for Mandy's and Olivia's health.
On November 2, 2014, our grandson Jeffery was blessed. Nicole and Jeff live in Washington (which is near St. George), but our five children all did what it took to be there. Jeffery was born on August 22, 2014. He is also a wonderful armful, and we're very grateful to have him as a part of our family.
2014 started out really good for us because Scott and Hailey had Jax on January 20th. He is such a sweet boy. He's brought an incredible joy into our family. Shaylee is now five, and Eli is four. They are such a delight. They love my scooter, and like to take rides on my lap.
I'm so grateful for a husband who is still my best friend after thirty years of marriage! He is the best thing that has ever happened to me! Now that my legs don't work, he is so much help. He's learned how to pull me up. Then I take little shuffle steps to get to a scooter or walker that will help me get around. I can't get into or out of bed by myself, so Alan does what it takes to get me there. I also can't get on and off the toilet without help, so Alan helps with that. He does it without complaining, and without acting like I'm a bother. I love and appreciate Alan.
Thursday, November 20, 2014
Tuesday, November 18, 2014
What Exactly is ALS?
I hope my mom won't mind me hijacking her blog from time to time. This is a family journey, and I feel like it is good for all of us to have the opportunity to share from our own perspectives.
Since my mom's diagnosis we have gotten a lot of questions about ALS. People want to know what symptoms she's had, how it was diagnosed, the prognosis, and many other things. A lot of these are questions we have had too. This is new for everyone. Probably the most common question I have gotten is "what exactly is ALS?" It's funny because the ice bucket challenge that took place a few months ago brought awareness to people who had never heard of it, but I wonder just how many people took the time to actually learn about the disease as opposed to just pouring a bucket of water over their head. Don't get me wrong, I think it's just fine that we do things like dump water over our heads to bring awareness to things, but until you know someone with ALS it is hard to know just how bad it really is.
When Jeff and I lived in California we had an amazing bishop get put in. (For those of you who don't know, we are members of the Church of Jesus Christ of Latter-Day Saints. Our lives are centered around our faith, so I'm sure we will refer to it a lot. You can learn more about our church here or here.) Shortly after this new bishop was put in, his amazing wife was diagnosed with ALS. I had no idea what ALS was until I watched her experience it.
So what is ALS? ALS Is commonly referred to as Lou Gehrig's Disease. In a very basic nutshell, ALS causes the the nerves that cause our voluntary muscles to die. So the nerves no longer can control the muscles. Over time this leads to muscle weakening, twitching, and an inability to move the arms legs, and body. Unfortunately there is no cure for this disease.
For my mom, it started from her feet and has gradually moved higher. She first really started to notice it in February of this year. Her legs started to feel weak for no apparent reason. Since then it has continued to progress. She went to many doctors and nobody could tell her what was causing it. A neurologist even eliminated ALS at one point. The wonderful doctors at the University of Utah were finally able to give us a diagnosis of ALS. While ALS was the last thing we wanted my mom to get, it was hard to watch her legs get worse and have no idea what was causing it.
A disease like ALS with no cure is a hard one to come to terms with. I am proud of my mom for accepting it with faith in our Heavenly Father's Plan. We are all going through the grieving process, but my mom has not been bitter toward God for allowing this to happen. She is a great example to all of us.
To learn more about ALS, visit the website for the ALS Association.
Since my mom's diagnosis we have gotten a lot of questions about ALS. People want to know what symptoms she's had, how it was diagnosed, the prognosis, and many other things. A lot of these are questions we have had too. This is new for everyone. Probably the most common question I have gotten is "what exactly is ALS?" It's funny because the ice bucket challenge that took place a few months ago brought awareness to people who had never heard of it, but I wonder just how many people took the time to actually learn about the disease as opposed to just pouring a bucket of water over their head. Don't get me wrong, I think it's just fine that we do things like dump water over our heads to bring awareness to things, but until you know someone with ALS it is hard to know just how bad it really is.
When Jeff and I lived in California we had an amazing bishop get put in. (For those of you who don't know, we are members of the Church of Jesus Christ of Latter-Day Saints. Our lives are centered around our faith, so I'm sure we will refer to it a lot. You can learn more about our church here or here.) Shortly after this new bishop was put in, his amazing wife was diagnosed with ALS. I had no idea what ALS was until I watched her experience it.
So what is ALS? ALS Is commonly referred to as Lou Gehrig's Disease. In a very basic nutshell, ALS causes the the nerves that cause our voluntary muscles to die. So the nerves no longer can control the muscles. Over time this leads to muscle weakening, twitching, and an inability to move the arms legs, and body. Unfortunately there is no cure for this disease.
For my mom, it started from her feet and has gradually moved higher. She first really started to notice it in February of this year. Her legs started to feel weak for no apparent reason. Since then it has continued to progress. She went to many doctors and nobody could tell her what was causing it. A neurologist even eliminated ALS at one point. The wonderful doctors at the University of Utah were finally able to give us a diagnosis of ALS. While ALS was the last thing we wanted my mom to get, it was hard to watch her legs get worse and have no idea what was causing it.
A disease like ALS with no cure is a hard one to come to terms with. I am proud of my mom for accepting it with faith in our Heavenly Father's Plan. We are all going through the grieving process, but my mom has not been bitter toward God for allowing this to happen. She is a great example to all of us.
To learn more about ALS, visit the website for the ALS Association.
Thursday, November 13, 2014
First Lesson I Learned
While we were in the doctor's office the day I was diagnosed with ALS, I didn't cry. I didn't dare, because I didn't know if I'd be able to stop. When we got in the privacy of our car, I sobbed and sobbed. I didn't really want to get home, because that meant we'd have to tell family what we'd just been told. Somehow I came out of the fog I was in, and noticed we were hitting every stop light red. The street had two lanes going the direction we were headed, and I noticed cars were going through lights that Alan was stopping at. I wondered where the cars were hurrying to. Then I realized that under normal circumstances, I'd be complaining about those red lights. (On the next visit, I counted. We hit thirteen lights red that day!) Dr. Kolb had told me that I now needed to "conserve energy." Then a lady came to tell us about their ALS clinic. She also told me to "conserve energy."
I found myself wondering how much time and energy I've wasted in my life getting upset about things I have no control over.
I made a goal that day not to waste any more time or energy worrying about inconsequential things. I need to save that time and energy for things that really matter.
I found myself wondering how much time and energy I've wasted in my life getting upset about things I have no control over.
I made a goal that day not to waste any more time or energy worrying about inconsequential things. I need to save that time and energy for things that really matter.
Thursday, November 6, 2014
Three Goals
As we have tried to get our heads around a diagnosis of "the average life expectancy of someone with ALS is three years," I have decided on three goals to govern this portion of my life: 1. Allow myself permission to cry, 2. Find joy in every day, and 3. Prioritize like crazy!
Not knowing how many tomorrows there really are can be very sobering.
We have found out that some people live a lot longer than the three years Dr. Kolb spoke of. However, a new doctor said that it seems to have moved faster than normal in my legs. Will it be that way in the rest of my body?
For now, we can only be thankful for what we have today, and find comfort in the fact that God is real, and that life and relationships go on even after death.
At first, every time I saw or heard the letters "ALS," I felt sick inside. I decided I needed a different attitude.
My mind went back to when I was renewing my teaching certificate. I was in a class with a woman who'd stayed home for years, like I had, to be a full-time mom. She had just finished her first year of being back. I asked her what had been the hardest thing about it. Her answer quite surprised me. She said something like, "The acronyms. They use all these acronyms all the time, and I don't know what they are talking about." A few months later, I was sitting in a faculty meeting about upcoming tests. Our assistant principal kept talking about PBTs and CBTs. I racked my brain for anything I'd learned in college with those letters, and could not think of anything! In desperation, I started looking at a handout we'd been given. Eventually, I discovered that PBTs were paper based tests (tests given on paper), and CBTs were tests given on the computer. I had to work at not laughing out loud! When I was in college there were no acronyms like that, all tests were given on paper!
Anyway, I decided that I needed a new acronym for ALS. Eventually, I came up with something that helps me feel better when I see or hear ALS. It is, "Always Learn Something!" I am now trying to look at the new, and sometimes difficult situations that are coming into my life from that perspective. It's been very helpful.
Not knowing how many tomorrows there really are can be very sobering.
We have found out that some people live a lot longer than the three years Dr. Kolb spoke of. However, a new doctor said that it seems to have moved faster than normal in my legs. Will it be that way in the rest of my body?
For now, we can only be thankful for what we have today, and find comfort in the fact that God is real, and that life and relationships go on even after death.
At first, every time I saw or heard the letters "ALS," I felt sick inside. I decided I needed a different attitude.
My mind went back to when I was renewing my teaching certificate. I was in a class with a woman who'd stayed home for years, like I had, to be a full-time mom. She had just finished her first year of being back. I asked her what had been the hardest thing about it. Her answer quite surprised me. She said something like, "The acronyms. They use all these acronyms all the time, and I don't know what they are talking about." A few months later, I was sitting in a faculty meeting about upcoming tests. Our assistant principal kept talking about PBTs and CBTs. I racked my brain for anything I'd learned in college with those letters, and could not think of anything! In desperation, I started looking at a handout we'd been given. Eventually, I discovered that PBTs were paper based tests (tests given on paper), and CBTs were tests given on the computer. I had to work at not laughing out loud! When I was in college there were no acronyms like that, all tests were given on paper!
Anyway, I decided that I needed a new acronym for ALS. Eventually, I came up with something that helps me feel better when I see or hear ALS. It is, "Always Learn Something!" I am now trying to look at the new, and sometimes difficult situations that are coming into my life from that perspective. It's been very helpful.
Monday, November 3, 2014
New Blog
As most people know by now, on October 7, 2014 I was diagnosed with ALS (Amyotrophic lateral sclerosis), more commonly known as Lou Gehrig's Disease. I have decided to start a blog to keep all my friends and family updated on my experiences as I adapt to living with a disease that has no cure. I will be posting updates and my daughters Nicole, Mandy, Emily, and Hailey will contribute at times too.
I am very grateful for the outpouring of love and support I've received this past month following my diagnosis. I invite you to follow along as we take this journey together.
I am very grateful for the outpouring of love and support I've received this past month following my diagnosis. I invite you to follow along as we take this journey together.
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