One Year

On October 7, 2014 I woke up feeling things that are hard to put into words. It was almost like I had a sense of impending doom. I didn't know what that day held, but something kept telling me it would be life-changing. I knew my mom had an appointment with a neuromuscular specialist at the U of U to go over her latest test results. We didn't know what the future held, but deep down I knew it wasn't going to be good. 

I tried to go about my day as normal and try not to worry about what my parents would be learning at the doctor that day. I had a doctor appointment for my 6 week old baby who was struggling with reflux. The doctor suggested that since he was mostly eating breastmilk that I should try eliminating dairy from my diet in case he had a food sensitivity. That was a hard thing for me to hear since I love my dairy products. As I drove home I kept thinking that maybe that was the only bad news and the reason for all my negative feelings. I tried to convince myself, but I still somehow knew that something worse was about to come. 

Needless to say it was a long day. I kept waiting for my parents to call and figured they should be done with their appointment. I tried calling a couple times and kept getting voicemail. Finally I reached my dad. He asked me to hold on for a second and then I could hear him talking to people in the background. When he came back he said he was asking my mom if he should tell me. I could tell by his tone of voice that what he was about to tell me wasn't going to be good. 

I don't remember much of what he said other than that they had just diagnosed my mom with ALS. My heart dropped. I wish I could say I was surprised, but Jeff and I had watched our bishop's wife in California go through ALS and that had been in the back of my mind as my mom kept showing more and more symptoms. 

Our call was pretty short. I was still trying to process everything and I know my dad was too. I got off the phone and called Jeff who was sweet enough to leave work early so he could come home and be with me. We talked and decided we didn't want Mandy to hear over the phone all alone so we decided to drive to her house and break the news to her in person. I felt for my dad in that moment. How do you tell someone that their mom has a horrible disease and that it's terminal?  It wasn't easy but we spent some time together trying to process it all. 

The past year has definitely been life-changing for my whole family. One of the strange things about ALS is that you spend a lot of time grieving. It's not like when someone passes away unexpectedly and the grief hits at once. With ALS you grieve when you initially get the news. Then you grieve as the person loses her ability to do certain things. We grieved as my mom progressed from having to use a walker to a scooter to her full electric chair in only a matter of months. We grieved as she lost her ability to use her hands and then as her speech started to go. We will grieve when she dies for sure, but in a lot of ways it will be a relief knowing that she no longer has to be trapped in her body that doesn't function. 

I don't mean to make it sound like we spend our days grieving because we absolutely don't. One of the big blessings of ALS (or any other terminal illness) is that you get the opportunity to tie up loose ends and say the things you might not have said otherwise. 

When my mom was diagnosed with ALS I told myself I was going to take as many opportunities to spend time with her as I possibly could because I didn't want to have any regrets. I don't even know how many times I loaded my little baby and all his gear into my car and headed up North. Up until July of this year I was going at least once a month. Sometimes just for a couple days and one time as long as 10 days. Jeff was so supportive of me leaving him behind and going up there. 

When I started having complications with this pregnancy my doctor told me no more traveling. I specifically asked him about going to see my mom and he said no. He knows the situation but he said it is way too risky and that me sitting in a car that long could cause me to hemmorhage and bleed out very quickly. My sweet parents have made an effort to travel here and see us even though it wears my mom out a lot. I know her traveling days are extemely limited and that most people in her situation would have stopped traveling months ago. But time is precious right now and I'm grateful for every minute that I get to spend with my mom. 

One of my big worries when I learned my mom had ALS was that she would go into a deep depression and not want to leave the house. She has done just the opposite. She has been determined to live each day to the fullest and she has surely done that. I know I have posted all their trips previously but they also went on a cruise to Alaska (with the whole family except for us due to my complications), they've come to St George and done all kinds of fun things close to home too. It has made me look at my life and wonder how much time I waste on things that just don't matter. Life is short and we need to make the most of it. I'm grateful to my mom for setting that example. 

I could write a whole book on the ways our life has changed in the past year, but for now I'm going to sign off. I know I've said it before but I'm going to keep saying it. I am SO grateful for the prayers and support that have gotten us through this past year. When my mom was diagnosed she was asked what kind of a support system she had. Without hesitation she responded that she had a great one. We knew she did, but people have been so much more amazing than any of us could have comprehended just a year ago.  I just hope that I can pay it forward and find ways to love and support others in their trials.