The current state of being after some dramatic change has transpired. What replaces the expected, usual, typical state after an event occurs. Encouraging us to deal with our current situations rather than lamenting what could have been. That is what came up when I Googled “the new normal”…I was wondering what it officially meant since everyone is always talking about it in relation to our life now. We have been a little out of sorts this week…maybe it was because we are home from vacation or maybe it’s because there is just too much with too little time or maybe it’s just ALS is constantly in our face front and center and it’s so tiring to always be fighting it to take a back seat! Anyway, everyone is always talking about living in “the new normal” and I have come to the conclusion that it doesn't work with ALS. There can be no “new normal” because this disease changes so fast that it is hard to even keep up. And while trying to keep up you need to fit in mourning for the losses. I can’t even explain it as a caregiver and I certainly cannot explain what it is like to live as a person with ALS…Bert will have to do that in another blog, but I can say that there is absolutely nothing normal about any of it.
We had a wonderful vacation, we enjoyed being with our friends, we enjoyed the beach and the beauty of the Outer Banks that we love so much, we renewed our wedding vows with Sophia and Alex which was very special and a check off the bucket list, we are grateful. We also mourned…the loss of vacation the way it used to be. Bert and I talked and we never want to dwell or seem ungrateful but we were sad sometimes…we have been going to the Outer Banks for many summers even before kids, we talked of retiring there, someday having a beach house. In past years we would wake up and hit the ground running, literally every morning, even last year even with ALS looming in the shadows we would road ride for miles and take long walks on the beach. ALS has robbed us of that, especially robbed Bert and it’s just not fair! Everything is a challenge, and I mean that literally when I say everything. ALS gets in the way of everything, it changes everything. It changes relationships, it changes vacations, it changes the way or if you even talk about the future, it changes living and it really pisses me off.
Yesterday was a meltdown day…every couple of months they happen we get them out of our system and move on, usually with a lot of laughter. Yesterday was a buildup of “living the new normal” for too long. I came home from work rushed as usual because kids had places to go, soccer, a basketball game and of course on opposite ends of town, now do not think for a minute that we do not have help, I could have called any number of people to help run kids places; but understand that my kids want me and they want Bert and Alex he really wants Bert to be there…they are “best friends” according to my son’s description of their relationship. So, we throw waters, food, soccer balls, and a change of clothes for the basketball game in the car, I grab Bert and get him into the car remembering drug trial pills and water for him and we are off. First drop off: soccer camp, then we decided we will drive back home so I can put Bert’s bike back together (it was in pieces from vacation and traveling), why one might ask why am I worried about this, well because Bert wants to ride his bike trainer. If you have ALS and every muscle is dying and you can’t walk without assistance and you have twitching and atrophy and difficulty with speaking but you can still ride a bike trainer even if it does take two people to get you on and off of it…then I’ll be dammed I am going to help you ride it if that is what you want to do. I am not very savvy with bikes and putting tires back on and chains that are greasy and especially not when we are in hurry so one thing lead to another and to make a long story short a meltdown occurred. This resulted in some crying and feeling sorry for ourselves and some anger, but in the end we ran out of time to pity our situation and we had to jump back in the car to pick up Alex. We both agreed on the way that neither of us would really ever know how the other felt…I will never ever know what it feels like to have my body shut down and have the pain and suffering of this disease and he will never know how it feels to be the spouse who cannot do anything to change it, to feel like you need to hold everything together to survive and watch someone you love die, I will never know how scared he is and he will never know how scared I am…but we both know that we are scared and we both could agree that the only thing stronger than fear is hope so we once again, and this is becoming an everyday occurrence; reminded ourselves of the promise we made to each other…to always and forever find a positive.
Next stop basketball game…we get to the park where the basketball game is being played, Alex is excited that Bert and I are both going to be there to watch the game, the other team is late, it is already 8 pm and now the game is pushed till 9 uhhgg! They finally start the game, we lose 28-6 or something like that…I kind of lost track of the score after the other team hit like 10…anyway Alex did not care…he loves to play win or lose and he was happy that we were there together watching. He talked to entire way home about the game and his plays and that his coaches said he did a good job.
Finally home…Sophia was waiting patiently for us to eat dinner. Dinner 10 pm: leftovers from my wonderful co-workers who have been making us meals…yummy lasagna! Bert and Sophia are in the kitchen and I hear them in hysterics. Just know that I am the only one in this family out of the loop half the time…those three are always hysterical about something usually involving me but not this time. I ask what is so funny…Bert and Sophia are laughing too hard to talk. Finally, I hear the story of how Sophia was messing around with Bert’s walking stick earlier and he told her not to touch the end of it because it touches the ground like in dirty bathrooms and stuff…well Bert decided to wet the end of the walking stick in the sink with water and when Sophia came in he touched her with it. Sophia was screaming because she thought it was pee and they both ended up in hysterics. This…people is what I am dealing with on a daily basis with these three. The night before it was dropped garlic bread on the floor that Alex and Bert used the five second rule on and put on Sophia’s plate without her knowing and giggled the through the entire dinner as she ate it. This is our “normal”.
After dinner Bert was sitting at the kitchen table and I was in the kitchen cleaning up. Bert’s phone dinged with a text message…he asked me to check it and it was from Alex (he was upstairs in his room) it was a picture of a heart from his candy necklace that he had from the basketball game’s snack bar, it said "love you dad" in the text. I handed it to Bert and we both just smiled. Sophia and Alex are the reason to have hope, they are what keeps us going and what makes Bert want to fight. No matter how bad the evening had been, no matter what was different and lost about vacation, no matter what obstacles lay in the path before us there is one thing that is steadfast, one thing that will never change and that is our family's love. ALS sucks and Bert and I hate "the new normal" but we will always find the positive and last night that positive was Sophia and Alex. They make us laugh and keep life light and make everything...even ALS better.
xoxo ~ Jennifer
We had a wonderful vacation, we enjoyed being with our friends, we enjoyed the beach and the beauty of the Outer Banks that we love so much, we renewed our wedding vows with Sophia and Alex which was very special and a check off the bucket list, we are grateful. We also mourned…the loss of vacation the way it used to be. Bert and I talked and we never want to dwell or seem ungrateful but we were sad sometimes…we have been going to the Outer Banks for many summers even before kids, we talked of retiring there, someday having a beach house. In past years we would wake up and hit the ground running, literally every morning, even last year even with ALS looming in the shadows we would road ride for miles and take long walks on the beach. ALS has robbed us of that, especially robbed Bert and it’s just not fair! Everything is a challenge, and I mean that literally when I say everything. ALS gets in the way of everything, it changes everything. It changes relationships, it changes vacations, it changes the way or if you even talk about the future, it changes living and it really pisses me off.
Yesterday was a meltdown day…every couple of months they happen we get them out of our system and move on, usually with a lot of laughter. Yesterday was a buildup of “living the new normal” for too long. I came home from work rushed as usual because kids had places to go, soccer, a basketball game and of course on opposite ends of town, now do not think for a minute that we do not have help, I could have called any number of people to help run kids places; but understand that my kids want me and they want Bert and Alex he really wants Bert to be there…they are “best friends” according to my son’s description of their relationship. So, we throw waters, food, soccer balls, and a change of clothes for the basketball game in the car, I grab Bert and get him into the car remembering drug trial pills and water for him and we are off. First drop off: soccer camp, then we decided we will drive back home so I can put Bert’s bike back together (it was in pieces from vacation and traveling), why one might ask why am I worried about this, well because Bert wants to ride his bike trainer. If you have ALS and every muscle is dying and you can’t walk without assistance and you have twitching and atrophy and difficulty with speaking but you can still ride a bike trainer even if it does take two people to get you on and off of it…then I’ll be dammed I am going to help you ride it if that is what you want to do. I am not very savvy with bikes and putting tires back on and chains that are greasy and especially not when we are in hurry so one thing lead to another and to make a long story short a meltdown occurred. This resulted in some crying and feeling sorry for ourselves and some anger, but in the end we ran out of time to pity our situation and we had to jump back in the car to pick up Alex. We both agreed on the way that neither of us would really ever know how the other felt…I will never ever know what it feels like to have my body shut down and have the pain and suffering of this disease and he will never know how it feels to be the spouse who cannot do anything to change it, to feel like you need to hold everything together to survive and watch someone you love die, I will never know how scared he is and he will never know how scared I am…but we both know that we are scared and we both could agree that the only thing stronger than fear is hope so we once again, and this is becoming an everyday occurrence; reminded ourselves of the promise we made to each other…to always and forever find a positive.
Next stop basketball game…we get to the park where the basketball game is being played, Alex is excited that Bert and I are both going to be there to watch the game, the other team is late, it is already 8 pm and now the game is pushed till 9 uhhgg! They finally start the game, we lose 28-6 or something like that…I kind of lost track of the score after the other team hit like 10…anyway Alex did not care…he loves to play win or lose and he was happy that we were there together watching. He talked to entire way home about the game and his plays and that his coaches said he did a good job.
Finally home…Sophia was waiting patiently for us to eat dinner. Dinner 10 pm: leftovers from my wonderful co-workers who have been making us meals…yummy lasagna! Bert and Sophia are in the kitchen and I hear them in hysterics. Just know that I am the only one in this family out of the loop half the time…those three are always hysterical about something usually involving me but not this time. I ask what is so funny…Bert and Sophia are laughing too hard to talk. Finally, I hear the story of how Sophia was messing around with Bert’s walking stick earlier and he told her not to touch the end of it because it touches the ground like in dirty bathrooms and stuff…well Bert decided to wet the end of the walking stick in the sink with water and when Sophia came in he touched her with it. Sophia was screaming because she thought it was pee and they both ended up in hysterics. This…people is what I am dealing with on a daily basis with these three. The night before it was dropped garlic bread on the floor that Alex and Bert used the five second rule on and put on Sophia’s plate without her knowing and giggled the through the entire dinner as she ate it. This is our “normal”.
After dinner Bert was sitting at the kitchen table and I was in the kitchen cleaning up. Bert’s phone dinged with a text message…he asked me to check it and it was from Alex (he was upstairs in his room) it was a picture of a heart from his candy necklace that he had from the basketball game’s snack bar, it said "love you dad" in the text. I handed it to Bert and we both just smiled. Sophia and Alex are the reason to have hope, they are what keeps us going and what makes Bert want to fight. No matter how bad the evening had been, no matter what was different and lost about vacation, no matter what obstacles lay in the path before us there is one thing that is steadfast, one thing that will never change and that is our family's love. ALS sucks and Bert and I hate "the new normal" but we will always find the positive and last night that positive was Sophia and Alex. They make us laugh and keep life light and make everything...even ALS better.
xoxo ~ Jennifer
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