I made a deal with God...I know everyone says God doesn't make deals but I think sometimes he will, anyway it was more like a pact (a formal agreement) that I asked for...I asked God to give my family strength if we took every negative thing that ALS brought to us and turned it into a positive...no matter how bad it gets. I think God agreed because we feel pretty strong.
Here's a little story and an example of a negative turned into a positive and we have ALS to thank.
Last week there was a little bump in the road, Bert has been working a lot from home lately, he will tell you I have locked him in the house but really I cannot help that it has been snowing every other day and the able bodied person can barely make it outside. I mean really we are trying to follow rule #3 safety. In the recent weeks he has had some appointments with customers and a couple trips to the office, so he went from throwing on sweats to having to get dressed in his suit. The other day I left for work like I always do and some drama unfolded at home. I received a call in the afternoon from Bert, I was in a meeting so I sent a quick text to make sure everything was ok, he texted back that he needed to talk so I called back right away. He said he was having a bad day and explained that there was a little trouble in the morning getting the kids off to school, they were running late. I reassured him that it would be ok and bad days would happen and we needed to just take one step at a time, we talked for a while till I thought he was better and then I went back to work. I heard the whole story later from Sophia and I knew something was up when my dad was calling. The real story was that he had not planned enough time to get dressed into a suit that required a button down dress shirt and dress pants with a zipper and a belt, forget the tie. I hadn't really thought about it before I left because like anyone I take getting dressed for granted. The clock was ticking for school and Bert struggled with the buttons until finally asking Sophia to help and then they were in a rush to get to school. Anyone who has ALS or knows anything about ALS knows there is no such thing as rushing, and if you have the symptom of spasticity you know that rushing makes you even slower because stress makes your muscles tighten even more. Another problematic symptoms of ALS is emotional incontinence (that's the technical term for getting upset very easily), so Sophia who is calm, level headed, and the most positive person I know was trying to calm her dad down on the way to school reassuring him that everything was going to be ok. Bert was becoming more upset because he was worried if they were late he would have to walk them in and in his state that would be a little difficult. They got to school, a little tardy but made it and he did not have to walk them in. Needless to say it was not the greatest start to the day. Later, the kids told the whole story to grandma who told grandpa who called asking why no one called him as he is only a mile away and could have helped. After I found out the whole story, we had a family meeting in our bedroom. It was decided that from now on we would one plan a little better for time and two not struggle with buttons, zippers, and belts because we are a team and there is always someone to lend a helping hand. Sophia made it clear that she would help with whatever was needed on two conditions one that Bert accept and ask for help when he needs it and two that he at least have underwear on before she helps get him dressed (she put Alex in charge of underwear when that time comes). Everyone agreed so lesson learned.
That is not the negative turned into the positive though...that little story is just what lead me to today. Today Bert had to make another trip to the office, and I did not take for granted this time that he could do everything himself and get the kids ready so I planned ahead. Now, some people might look at not being able to do things for yourself like buttoning a shirt quickly (he can still button, it's just slow) or getting dressed as fast as you used to and getting off to work quickly in the morning as a negative. Most people hurry each morning, in their routine of showering, dressing, getting kids on the bus, grabbing their coffee and getting off to work. They may not have time to spend with their spouses or children, the morning routine is usually hectic. For people living with ALS and the people helping them everything slows down, more time is spent together, the everyday routine needs to be planned, and here is where what could have been a negative was turned into a positive. God kept his pact with me...I didn't feel loss and Bert wasn't sad because I helped with a few buttons and his socks and shoes just to make things a little faster. We felt strong together and I was grateful the whole way to work this morning because it was nice to spend time with my husband. We had a laugh because as I am sure many "caregivers" realize along the way they may not be that much faster or that good at buttoning shirts and tying shoes...as I was pretty slow myself today. We talked while we were getting ready about the day ahead, I made sure he had snacks and his meds and kissed him good bye like I meant it before seeing him off to work. We felt happy this morning and not rushed at all. So, thank you ALS because if it weren't for you I wouldn't have had such a nice morning with my husband today, thank you for allowing me to see what really matters in this life.
And thank you God for making the pact with me...you gave me strength and I was able to turn a negative into a positive.
One small positive thought in the morning can change your whole day:)
xoxo Jennifer
Here's a little story and an example of a negative turned into a positive and we have ALS to thank.
Last week there was a little bump in the road, Bert has been working a lot from home lately, he will tell you I have locked him in the house but really I cannot help that it has been snowing every other day and the able bodied person can barely make it outside. I mean really we are trying to follow rule #3 safety. In the recent weeks he has had some appointments with customers and a couple trips to the office, so he went from throwing on sweats to having to get dressed in his suit. The other day I left for work like I always do and some drama unfolded at home. I received a call in the afternoon from Bert, I was in a meeting so I sent a quick text to make sure everything was ok, he texted back that he needed to talk so I called back right away. He said he was having a bad day and explained that there was a little trouble in the morning getting the kids off to school, they were running late. I reassured him that it would be ok and bad days would happen and we needed to just take one step at a time, we talked for a while till I thought he was better and then I went back to work. I heard the whole story later from Sophia and I knew something was up when my dad was calling. The real story was that he had not planned enough time to get dressed into a suit that required a button down dress shirt and dress pants with a zipper and a belt, forget the tie. I hadn't really thought about it before I left because like anyone I take getting dressed for granted. The clock was ticking for school and Bert struggled with the buttons until finally asking Sophia to help and then they were in a rush to get to school. Anyone who has ALS or knows anything about ALS knows there is no such thing as rushing, and if you have the symptom of spasticity you know that rushing makes you even slower because stress makes your muscles tighten even more. Another problematic symptoms of ALS is emotional incontinence (that's the technical term for getting upset very easily), so Sophia who is calm, level headed, and the most positive person I know was trying to calm her dad down on the way to school reassuring him that everything was going to be ok. Bert was becoming more upset because he was worried if they were late he would have to walk them in and in his state that would be a little difficult. They got to school, a little tardy but made it and he did not have to walk them in. Needless to say it was not the greatest start to the day. Later, the kids told the whole story to grandma who told grandpa who called asking why no one called him as he is only a mile away and could have helped. After I found out the whole story, we had a family meeting in our bedroom. It was decided that from now on we would one plan a little better for time and two not struggle with buttons, zippers, and belts because we are a team and there is always someone to lend a helping hand. Sophia made it clear that she would help with whatever was needed on two conditions one that Bert accept and ask for help when he needs it and two that he at least have underwear on before she helps get him dressed (she put Alex in charge of underwear when that time comes). Everyone agreed so lesson learned.
That is not the negative turned into the positive though...that little story is just what lead me to today. Today Bert had to make another trip to the office, and I did not take for granted this time that he could do everything himself and get the kids ready so I planned ahead. Now, some people might look at not being able to do things for yourself like buttoning a shirt quickly (he can still button, it's just slow) or getting dressed as fast as you used to and getting off to work quickly in the morning as a negative. Most people hurry each morning, in their routine of showering, dressing, getting kids on the bus, grabbing their coffee and getting off to work. They may not have time to spend with their spouses or children, the morning routine is usually hectic. For people living with ALS and the people helping them everything slows down, more time is spent together, the everyday routine needs to be planned, and here is where what could have been a negative was turned into a positive. God kept his pact with me...I didn't feel loss and Bert wasn't sad because I helped with a few buttons and his socks and shoes just to make things a little faster. We felt strong together and I was grateful the whole way to work this morning because it was nice to spend time with my husband. We had a laugh because as I am sure many "caregivers" realize along the way they may not be that much faster or that good at buttoning shirts and tying shoes...as I was pretty slow myself today. We talked while we were getting ready about the day ahead, I made sure he had snacks and his meds and kissed him good bye like I meant it before seeing him off to work. We felt happy this morning and not rushed at all. So, thank you ALS because if it weren't for you I wouldn't have had such a nice morning with my husband today, thank you for allowing me to see what really matters in this life.
And thank you God for making the pact with me...you gave me strength and I was able to turn a negative into a positive.
One small positive thought in the morning can change your whole day:)
xoxo Jennifer
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