The Horrible Consequences of ALS

THIS IS ABOUT MY MOM, SO IT'S A LONG POST.:)

I can't update my blog without updating you about what has happened to my life.  My beautiful mother was diagnosed with ALS, also known as Lou Gehrigs Disease, about two and a half years ago.  It is a horrible disease that I hope they find a cure for soon!  It's a disease that attacks the nerves in your body until they are pretty much dead: with the loss of function of the nerves the muscles in that area die as well. 

My Mom suddenly lost her energy about four years ago.  She knew there was something wrong with her and she went to different doctors, different specialists but was never able to find out.  I'm not sure why she chose to see a neurologist but after about 18 months of specialist she finally went to the U of U neuro unit.  She happened to see Dr. Bromberg who is the Dr. specializing in ALS here in Utah.  He took one look at her hand and knew what was wrong. 

I remember my Mom coming to my house that horrible night in March of 2010.  I was washing the dishes and was excited that my Mom had come to visit.  She didn't waste time and she didn't waste a tear telling me what she had.  I knew exactly what ALS was because of school and because of friends parents and I immediately started bawling.

This wasn't in my life plan.

My Mom was supposed to get old!  She was supposed to be around to see all of my kids grow up!

Even then, my Mom started this whole process with her awesome attitude.  ALWAYS positive!

I, on the other hand, did not start with that positive attitude. I think that it's not just when a person passes that you go through the bereavement process, it's when there's a terminal diagnosis.  All of us kids and spouses went through the process of anger, denial, and then acceptance.  The process would start afresh with each progression in the disease.  My Mom started to speak differently, like her tongue was too big for her mouth.  She then had a raspier voice.  This started about 6 months after diagnosis.  That and lack of energy were the things that were affecting her life.  Little by little we could tell her hands weren't as strong, then her voice was gone all together.

We as a family bought her an IPAD last Christmas so that she could begin to speak with the grandkids.  She would write us notes but I could tell that beautiful bond she had with my kids was slipping because they couldn't communicate with her.  She had a program on the IPAD where she could type and it would speak for her.  It was great to see those little kids light up when they could speak with her!  They loved to change the voice of the IPAD so it was a man speaking really low, or a woman speaking really fast.

Her back began to get weak and needed to get a wheelchair.  She had a motorized wheelchair and started using it full time probably around Christmastime last year.  Her legs weren't as good as they had been, but could still use them to change from one chair to another, but stairs were pretty much out of the question by then.  One of my favorite memories was her having races with my son: she in her wheelchair and he on his bike.  I remember her laughing and throwing her head back she was having so much fun.  It looked like so much fun that the neighbors girl also wanted to chase her.  It was a great day!

My little brother was her continuous caretaker all of these years.  He was always there and helped her with anything that she needed.  They had a great relationship and were always joking.  He would help her with her  medicine, feed her (which was taken by a 'button' she would call it, through her stomach).  She never complained and always had a good outlook on everything.

We were able to visit her the day before she passed away.  My brother and I believed her that she was going to live for years to come.  When I saw her that day, she looked incredibly sick.  She was pail and looked exhausted, but was smiling.  We thought she was so ill because of a new medicine she was taking.  I was excited because my kids were starting school that next day and I would be able to come help her more. I just lived blocks away and was always there when she needed any help: be it shower or whatever she needed, but of course, one always wanted to help more than they could.

I remember telling her a blonde joke, her laughing and us talking about family.  The last thing we spoke about was a family member who was having problems in her life.  She was so concerned and wanted to make sure she was okay.

She hugged me differently when we left.

She knew.

I have struggled wondering why she didn't tell me.  Wouldn't that have been nice to know?  No, it wouldn't have.  She didn't want to put more stress on any of us.  I know she didn't want to leave us, but she was at peace. Days later I found out that Dr. Bromberg had said that she was living by pure willpower, her body should have shut down months ago.  I am so grateful she stayed just a little longer with us.

I am also at peace.  I miss her a ton and often make myself dream about her, but I am glad to know that she is finally on her mission.  Her whole life she talked about how one day she would be a missionary and would share her testimony of Jesus Christ with anyone who would listen.  She is fulfilling her wish.  I am glad that she first shared that testimony to me and help me grow with a knowledge of Christs teachings.

Families Are Forever!