I struggle to even begin this post, because I know it’s the first post I’ve written that my dear friend Patty will not be reading. We lost her to this wretched disease yesterday morning and I miss her so much already. The good news is that I know exactly where she is, and that she is running down streets of gold with two perfectly healthy legs! I wish that I could have caught a five minute glimpse of her first meal in Heaven. I know she was missing being able to eat.
Though I am extremely happy for Patty, I am sad for me. She was such a help and encouragement to me these last several months. I am not sure if I am ready to navigate this ordeal without her prayers and advice- she would say that I am though. All I can say is that I will try my best, and keep in my heart all the things that she shared with me, all the Bible verses she wrote out. Never once did she waver in her faith or her fight.
I know that we said our goodbyes and our thank yous and there wasn’t anything I left unsaid; however, I will probably always still wish for one more conversation. She was truly a remarkable lady. See you soon, Patty Blake.
We celebrated Easter together as a family this past weekend. And by family, I mean my parents and siblings and all our kids. My mother wanted everyone to be together for at least one holiday, mostly for Dad’s benefit. We all had a great time. It was also my niece and nephews birthday so we celebrated that too. Two cakes and some ice cream later, (we won’t mention the Easter candy) I’m pretty sure I put back on the so called 0.7 lbs I supposedly lost last week. (And then some!)
Dad looked pretty good. He shaved his beard off so I am guessing he must’ve bought an electric razor. He grew the beard in the first place because he was having trouble holding the disposable razors he is used to using. I remember how he used to grow a beard every winter for hunting purposes; he said it kept him warmer out in the tree stand. And speaking of tree stands, my dad is wondering if falling out of one is what brought on the ALS. It was a pretty nasty fall- he messed up his back and apparently it affected his spinal cord and brain. He said he hit his head pretty hard. I guess it would make sense, seeing as how ALS has never been found in any of his family. And then there’s that football player/concussion theory…
For the time being, we are seeing either a slowing or a stopping to the ALS symptoms. He said that the twitching has calmed down considerably, and he doesn’t need his oxygen anymore- I need to explain that though– The hospital that admitted him several weeks ago put my dad on oxygen because his levels were so low. However, his ALS doctor said that they don’t understand ALS. It’s not his lungs that need the air- it’s the ALS attacking his diaphragm muscle. Imagine lying in bed with a sack of potatoes on your stomach. That’s how a person with ALS feels. So when my dad is feeling short of breath, he goes in his room and puts on his breathing machine. It is also this machine that helps keep his oxygen levels up. It works great for now- his levels stay up where they need to be. I told him that it has to be all of the prayers that are going up for his behalf, and maybe the Frankincense/black pepper/ginger oil combination that I made for him in a roller bottle. My mom rolls that at the base of his brain stem and down his spinal cord.
I will take any positive news I can get. The Lord knew I needed the break emotionally. It’s hard for me – for our family, when things move too fast. I can tell my dad is enjoying the break too. He waits on me hand and foot. He can barely hold the dishes, but he makes me a cup of coffee and carefully brings it to me at the table. Same with a glass of water for my dinner- he won’t let me get up and get it myself. It’s heartbreaking, sweet and amazing all at the same time. I don’t say a word; I just let him do it because I know that he NEEDS to do it.
This is how we do ALS- one day at a time, sometimes one moment at a time. You can’t look too far ahead of it, or you could potentially miss out on focusing on the precious times together. I choose to be thankful for every little gift God gives us during this trial.
You know the saying, “It’s about to get real”? Well, we are there. It’s only been 3 months since diagnosis, and already my dad is hooked up to an oxygen unit. His oxygen levels were so low the last couple of weeks that he was nauseated. He hasn’t been able to eat much because of the nausea, but thankfully now that he is “suited up” with the oxygen he has begun eating again. Mom says he eats better when I go down there and visit. If that’s the case I know he does it so I won’t be worried. He knows what an emotional train wreck I am.
It’s tough seeing a parent suffer like this. He has a hard time taking a deep breath because this stupid disease is paralyzing the muscles he needs to breathe. I thought this happened at the later stages of the disease. I don’t feel ready to deal with this so soon, but then again, when would I ever?
We are also at the part where my mom needs help in caring for his needs. She is working two jobs at the moment, so she needs help with various things- dinners prepared in advance that are easy for dad to warm up himself, etc. After discussing this with my husband, it has been decided that I will be traveling the 2.5 hours to their house every other week as a trial to see how that works out.
In the meantime, I am doing my best to “fight” and work through my emotions. My pastor gave out a challenge in January to read the Bible through in a year. I have accepted that challenge and so far, I’m on my fifth week doing that. Today I started a new prayer journal, and I also have a separate notebook to write out verses that I find really speak to my heart. My hope is that I fill my mind with Scripture and prayer so much that it will enable me to keep right thinking as I try to deal with the effects this disease will have on us all. I know that I am going to need to have a lot of Bible verses handy especially on the tough days.
I think that is all for tonight. Sleep is going to become non-existent soon enough so I should get as much as possible now. If you are a praying person, I would certainly appreciate prayers for my dad and my family. Thank you for listening.
I am slowly coming to the realization that acceptance is the only way to begin to deal with this monster. Being an emotional wreck is not helpful to my dad, or anyone else in our family for that matter. So I’ve decided to take the “FIGHT” approach. The first step is to figure out how to make as many memories with my dad as possible. For Christmas, I bought recordable storybooks for all the kids in our family. My dad recorded himself reading the most beautiful stories. My little girl loves to hear “Papa” read to her – he slipped in extra “I love yous” on some of the pages. I’m pretty sure he knows why I wanted him to do this. It was tough holding back tears when the kids opened their books on Christmas Day.
Next up is a cruise. This one could get tricky because it’s not until October. We were limited on dates because of our budget. So far, disease progression has been relatively slow and we are praying it stays that way so he can not only go on the cruise, but be able to enjoy it.
ALS is a horrible disease. There is no treatment, no cure. It is what it is and I can’t do a thing about it. But I have made up my mind that it will not destroy me. Losing my son almost did that. This time it has to be different- my dad, my family, is counting on me to hold it together.
My dad received a diagnosis of ALS on November 5, 2015. I can’t even begin to describe the heartbreak I feel. My dad has always been strong- he is a contractor, the best in the business actually. He has already had to quit work because he is having trouble holding a nail, and he can no longer do the quality work he is used to with the trowel. He traded in his work van for a beautiful truck and my mom never said a word. I told her to let him do or buy anything he wants. Anything to make him happy.
This is the part where I don’t like being the firstborn. I am the emotional one, so holding it together for everyone else is going to be tough. I spent the first few days crying, feeling sick, and generally unable to eat. You see, I know what this disease is. I’ve seen firsthand what this disease can do. I had a housemate who lost her sister, father, and most recently her brother to this horrible disease. It blows my mind- I mean what were the chances that I too would be asked to travel down this road? The statistics say it’s rare. But then again, 7 years ago I was told that I shouldn’t have to worry about my pregnancy because my little baby only had a 1 in 10,000 chance of having a fatal chromosome issues that I had never heard of before. As it turns out, he had it. He was born still a few months later. I try so hard not to ask “Why?”.
Please God, help me to trust You with this awful news. Please carry us through as you did with the death of my son. I do not feel very strong right now.
I was recently given some devastating news about someone I love. It was suggested to me that I start an anonymous blog to have a place to put my feelings. I hope that in doing this that I will also be able to raise awareness of this horrible disease and maybe even help others who may be struggling with difficult times. Welcome to my blog!