Drinking from the Bitter Cup

I started writing this post over a year ago and even though I worked on it several times I was never able to finish it. Be forewarned that there are probably more than a few grammatical errors and times where I switch from talking in present to past tense because I've rewrote this I don't know how many times and each time I cry and then when I try to reread it I cry and I'm just a mess and so is this post.

I'm fast to share funny, embarrassing, or down right awkward moments that I have in my life. To me, those are easy to share. It's the serious moments, the big and important life moments that I struggle with sharing. Some things need to be shared, and I really want to share an amazing woman and the struggles that we went through over that last 2 years.

The summer of 2017 my Mother-in-law was having trouble with her hand, she thought it was a pinched nerve or arthritis. We kept telling her that she need to go to the doctor and have it checked out and she kept saying that she would. It got to the point where she wasn't really able to use her left hand and we told her that if she didn't go to the doctor she couldn't see the grand kids anymore. She eventually went and they slowly started ruling stuff out and she started having trouble with her arm. By December she couldn't use her arm and she had fallen multiple times, even though she kept telling us her legs where fine, she just tripped over the dog, or a shoe, or the floor was slippery, we knew she wasn't telling us the truth or to the full effect of what all was going on.

Little by little we would find out more, there were multiple times that we would talk and she'd share something with me and ask me not to tell the boys (her sons). I knew she didn't want to worry them and she spent their whole lives serving them and putting them first, she didn't want that to change.

By December 2017 she had been diagnosed with MS (Multiple Sclerosis). At the time I remember being really upset and thinking about how badly it sucked, but also being a bit relived because it wasn't something we couldn't handle and there was the hope of her going into remission and regaining what she had lost. We all started researching it and trying to get her into clinical trials. Joined support groups. They went to appoints in different states to see specialist in this field. Started different rounds of medication. Even started different homeopathic (and slightly crazy) remedies to help slow the progression. As time went on I kept thinking the diagnosis doesn't make sense because she kept getting worse and wasn't in extreme pain like people who suffer from MS are. She quickly was losing ability to move her other arm and walk without assistance. She began slurring her words when she talked but just like our request to start using a cane, and then the walker, and then the wheelchair, she refused to get a communication device. June 2018 her doctor said that they wanted her to go see a different specialist and have some test run because they didn't believe that it was MS. In August 2018 Kim was diagnosed with Amyotrophic Lateral Sclerosis (ALS).

ALS is a progressive neurodegenerative disease that affects nerve cells in the spinal cord and brain. It kills the motor neurons in a persons body, causing muscles to weaken and stop working. While the disease itself doesn't kill you, it is terminal, and once diagnosed people typically have 2-5 years to live. People with ALS lose the ability to walk, talk, eat, and eventually breathe. Over the last few years there has been a lot of new information and medicine discovered that helps slow down the progression of symptoms.

Kim was always a very active person and the doctors still recommended staying as active as you can. Even when she could no longer walk she would come up with different ways to stand and work her muscles. We would help her stand up, give her the walker while she leaned back against a wall, block the walker from falling or moving forward with the wheelchair and she would be able to stand and do small, shallow squats and she would do that as long as she physically could. Soon she lost her ability to talk and walk and when she had no other choice but to use the wheelchair and communication device she did.

I spend most nights laying awake in bed for hours because I'll randomly wake up or one of the kids would wake me up and inevitably I'd start to think about Kim. Most of the time it just made me sad and left feeling helpless. Some times it made me really angry! I'm mad at the disease, I'm mad that there's no cure, I'm mad that there seems to be so little awareness of the disease. Mostly I'm mad that it had to happen to Kim. A woman who worked multiple jobs, doing long shifts at crazy hours getting little to no sleep in between because she wanted to have the extra money to spend helping her kids and buying her grand kids everything they wanted. A woman who spent most years of her life serving others. A woman who was so selfless that it was honestly annoying, I can't tell you how many times we would try to force her to do something for herself, something that made her happy... but doing something for herself isn't what made her happy, it was doing things for others. Takings the kids to the park or sitting outside for hours playing in rocks and water with them. Taking them on walks to find "crystals" that she had planted along the path earlier. I could go on forever with examples... She was supermom and super-grandma... she taught me how to be a wife, mother, and daughter of God.

Kim was the young women leader and I was able to help and she took us over to visit with a members who wife was sick, we brought food and signed cards and just visited with the husband as he shared stories with us.

Right after I had Max, Kim came up to help and we went to the park and Maddison crawled under the playground equipment playing some game and I'm telling her to get out from under there and off the ground and Kim just gets down and crawls under with her and keeps on playing. 

We went on a cruise a few years ago and Maddison and Kim spent most of their time eating ice cream while relaxing in the hot tub because that's all Maddison wanted to do. 

Kim would pull up games and play them with the kids on the talking device, the kids loved it and she loved still being able to do something with them.

We are thankful and grateful for each day that we have and praise the Lord often so I don't want to sound like it is anything less. Having to watch someone go from doing everything for everyone to not being able to do anything for themselves is a very difficult transition. I dearly miss being able to talk to Kim the way we used to... even if it was annoying at times to have her call 15 times in a row changing the plans, trying to make it easier or better for everyone, or calling repeated about a toy for the kids or play date. Even though we might have told her that they did not need this toy or to do this activity, if the kids wanted to do it, she found a way to make it happen. Even in the last days when she would work so hard to tell us to do/get this or that for the kids or when friends came over to visit and help her she would have them go online and buy a gift for the kids and surprise everyone when it showed up.

 When we got her communication device set up for the first time, she didn't  use it to talk to us about anything with her health or things that we could do for her that would help or make it easier (even though we know very much that there are things that we could do better and if she could talk to us she could say oh no, this would be a better way to help me with this or that) instead she found out there were games on the device and took turns with the kids sitting with her and playing the games. Part of me wanted to be irritated with her, we have so much medical stuff we could have been trying to go over, but she just wanted to make the kids happy and to be able to do something with them again.

 Into August we knew it was the end and even though we typically were able to see each other several times a month we were all able to go to Dallas to visit with the whole family several times from August to October. The last week her sons were all able to go and stay with her and I know that meant so much to her and made her so happy. They watched old family movies which were very embarrassing and it was fun to see that she climbed in ball pits and was playing with her kids the same way that she would climb into playground equipment and play with her grand kids at Chick-Fil-A or the park.

Kim returned to our Heavenly Father late Thursday September 26th, surrounded by family and loved ones. The last thing that she said was that she had such a great family. At her service people shared stories about the type of person and mother that she was and the things she did for others. The service was beautiful and the day we laid her to rest was sunny and in the 70's with a light breeze. I couldn't stop thinking about as much as it was perfect, she would have hated that we were all there for her instead of taking the kids to the park because it was such a beautiful day.

Losing Kim has reminded me how important family is everyday, because it's the little moments each day that make up who we are and how we are remembered. I want to be remembered as the fun crazy mom/grandma who didn't care what people thought about me crawling through the playground because it makes the kids happy and that makes me happy. I want to be remembered for serving others and forgetting about myself. I want to be an example of our Savior and his love. I want to be like Kim.

There's a quote that from the first time I heard it, it reminded me of her...

I know that Kim showed up in that old green station wagon that she used to drive even though it had problems and everyone told her to stop driving it, that she got out and took a big full breath and ran into the arms of our Heavenly Father and that he knew that she was here and she really lived. That she showed others the love of our Father and shared with them his gospel.

Kim start running track in 7th grade and continued throughout high school as well as playing many other sports. 

In typical Kim fashion she is not paying attention to getting pictures taken because she is playing with her kids and showing them a new toy

One of my favorite pictures because you can just feel the love that she has for her kids

 

Our last Christmas, we were able to attend the AR ALS Christmas party. They helped so much throughout the entire illness and were a huge blessing!

Dallas walk to defeat ALS

We were able to attend the Dallas walk to defeat ALS the end of October and it was an amazing event and we were able to get together with family and walk in memory of Kim. If you would like to donate to the Texas ALS foundation through our team you can click here and donate through any team member. If you'd like to learn more about ALS or have question you can visit the ALS Association and to donate to US ALS Association you can click here.

If I could give any advice to those living with ALS or with a loved one who is living with ALS it would be to do everything you can while you still can. Go on all the trips, take pictures, record your stories (I desepratly wish we could have a recording of Kim saying I love you), don't stop fighting and living every day you have left. There have been great steps forward in slowing progression and getting closer to a cure over the last few years, never give up hope.