I have thought often about how children must feel when they have a parent who is sick with a terminal illness. I have been in awe of my own children dealing with this unfair hand they have been dealt and I have witnessed the pain in their eyes that they try and keep secret. I cannot know exactly how they feel. My parents are still alive and healthy. I have not felt the fear of death in the house when I was growing up, I am not even sure if illness or death ever even entered my mind when I was my children's age. The other day I got a glimpse into what it might feel like through my son's point of view.
It's been a difficult fall soccer season. One of those sports seasons where nothing seems to be going right and no matter how hard the kids try things just have not seemed to click for them. Practice after practice and game after game the team seems to be out of sync. Just to throw in a little perspective we are talking about 11 year olds here and we are not playing in the world Cup rather the local club team. I felt the need to point that out because I have witnessed my favorite professional teams having terrible seasons. But none the less it is frustrating when time and effort is put forth in practice and you can't seem to win a game. Bert coaches this group of pre-pubescent boys who all dream of becoming the next Ronaldo. Coaching boys this age is a challenge for anyone, add ALS to that equation and progression the last couple months and it is very difficult. I also should add that it is never easy to coach your own child.
We practice two evenings a week outdoors in the ever changing fall weather and travel to games on the weekend. My son gets to participate in the fun of getting to practice after he gets off the bus from a long day of 6th grade. He must grab a snack and start his homework, then get himself ready for practice and then we start...I do the bathroom duty (because it is not very easy to use the porta potty at the field), my son gathers the ball bag, soccer bag with first aid kit and any other workout items we need and packs them in the van. I am usually barking orders at him because no matter how much I pre plan we are always running late. Do we have the cough drops, did someone grab the evening pills, where are the sunglasses, are the dogs in the house do we have water? Strap dad in while I run to grab the keys I forgot on the counter. My son guides his dad's wheelchair into the van, buckles his seat-belt and straps in the wheelchair. OK, are we ready I ask, do you have your cleats and shin guards? And we are off. At the field my son unhooks the nylon blue straps holding his Coach in the van, grabs his soccer bag and the ball bag and heads off towards the field. It's not easy to get anywhere when you are dealing with ALS.
Bert cannot walk, he can use his arms and hands very little, his voice is slow, diminished, and usually interrupted by bouts of coughing. He chokes often, twice I had to Heimlich him. He uses a cough assist machine that pushes air into his lungs and pulls it out assisting him to cough and expectorate any lingering secretions, we use a suction machine. Bert needs to be fed his meals, he needs assistance with everything. Our children help with his care. ALS is a family disease. They are still children though, in the midst of a serious illness that is going to kill their father. They witness the havoc ALS has wreaked on their dad, they see what he has been robbed of, they are afraid when he chokes or falls, or is in pain. Terminal illness is not something that most adults can cope well with, it is a constant weight, a feeling of pure helplessness, a form of torture to watch someone you love suffer. But life goes on, you are still expected to function; to go to work, take care of your house pay the bills, mow the lawn and participate in life when most of the time you feel like staying in bed and pretending it's all a dream. Our children feel the weight too, the fear, the helplessness, and yet they still need to go to school, do their homework, play their sports and behave. Children who witness their loved one battling ALS bear a heavy burden.
Saturday we had a soccer game, it was the first really cold day this fall, very windy. We made it to the field for warm ups and began the game. My son was out of sorts when the game began, the first 10 minutes he just seemed flat, then he came off the field with a bad attitude and an unwillingness to follow the directions Bert gave. The game just didn't go well, our opponent out played us and we lost. I was frustrated with my son, I wanted him to play the way I knew he could. On the way home I lectured him, I told him that it took time from his dad and from me to get him to practice and games. I said if he was going to act like he didn't care I wasn't giving anymore of my time. I told him I was angry, that he needed to be a team player, that he embarrassed me when he behaved with a bad attitude. I told him to go to his room when he got home. He didn't say a word, Bert didn't say a word. I ranted.
Later when I calmed down I felt sorry that I had blown up, I went upstairs to talk to my son. He was in bed snuggled under his covers. I told him I was sorry for yelling at him. He replied "don't be sorry mom, I deserved to be yelled at." I looked at him confused and asked him what he wanted to do, did he want to play, did he want his dad to coach? He replied "yes I want to play and yes I want dad to coach." I asked why he behaved the way he did, why he refused to even try and he simply said "Mom, everything is so hard for us and I was just cold and tired." All I could do was hold my boy, for I knew what he meant, our life is hard right now, we are all tired. He hugged me back and said matter-of-factly "I really need tights and a hat for next game and I am sorry for not playing hard enough."
I realized that the soccer game win or lose was not the most important thing right then, what was most important was for me to nurture my son to try and take some of his burden. To sympathize with his exhaustion. Being a kid is hard, being a kid who's dad has ALS is even harder.
I have made an observation as Bert's ALS has progresses: as ALS progresses, and everything gets more difficult and slows or stops life keeps speeding along, people around us are zipping to and fro from work and school to activity and social life, the hurry of everything does not stop for this disease. It sometimes feels surreal to me. And although I do not expect people to understand what this journey is like, I must remind myself that it is my responsibility to take care of my husband and my children. I have the control to slow things down as much as possible for us so that we can live in the moment, enjoy our time together, and learn from this journey. Our motto: always a positive has been a challenge recently, some days that positive is hard to find. Later that evening I found it though...I passed by the family room and glimpsed my two boys watching a basketball game together...Bert in the recliner and my son sitting beside him in the wheelchair, feet propped up on the walker. They were in deep discussion about sports. For that moment life did slow down and they were just a father and his son watching the game together.
~Jennifer
It's been a difficult fall soccer season. One of those sports seasons where nothing seems to be going right and no matter how hard the kids try things just have not seemed to click for them. Practice after practice and game after game the team seems to be out of sync. Just to throw in a little perspective we are talking about 11 year olds here and we are not playing in the world Cup rather the local club team. I felt the need to point that out because I have witnessed my favorite professional teams having terrible seasons. But none the less it is frustrating when time and effort is put forth in practice and you can't seem to win a game. Bert coaches this group of pre-pubescent boys who all dream of becoming the next Ronaldo. Coaching boys this age is a challenge for anyone, add ALS to that equation and progression the last couple months and it is very difficult. I also should add that it is never easy to coach your own child.
We practice two evenings a week outdoors in the ever changing fall weather and travel to games on the weekend. My son gets to participate in the fun of getting to practice after he gets off the bus from a long day of 6th grade. He must grab a snack and start his homework, then get himself ready for practice and then we start...I do the bathroom duty (because it is not very easy to use the porta potty at the field), my son gathers the ball bag, soccer bag with first aid kit and any other workout items we need and packs them in the van. I am usually barking orders at him because no matter how much I pre plan we are always running late. Do we have the cough drops, did someone grab the evening pills, where are the sunglasses, are the dogs in the house do we have water? Strap dad in while I run to grab the keys I forgot on the counter. My son guides his dad's wheelchair into the van, buckles his seat-belt and straps in the wheelchair. OK, are we ready I ask, do you have your cleats and shin guards? And we are off. At the field my son unhooks the nylon blue straps holding his Coach in the van, grabs his soccer bag and the ball bag and heads off towards the field. It's not easy to get anywhere when you are dealing with ALS.
Bert cannot walk, he can use his arms and hands very little, his voice is slow, diminished, and usually interrupted by bouts of coughing. He chokes often, twice I had to Heimlich him. He uses a cough assist machine that pushes air into his lungs and pulls it out assisting him to cough and expectorate any lingering secretions, we use a suction machine. Bert needs to be fed his meals, he needs assistance with everything. Our children help with his care. ALS is a family disease. They are still children though, in the midst of a serious illness that is going to kill their father. They witness the havoc ALS has wreaked on their dad, they see what he has been robbed of, they are afraid when he chokes or falls, or is in pain. Terminal illness is not something that most adults can cope well with, it is a constant weight, a feeling of pure helplessness, a form of torture to watch someone you love suffer. But life goes on, you are still expected to function; to go to work, take care of your house pay the bills, mow the lawn and participate in life when most of the time you feel like staying in bed and pretending it's all a dream. Our children feel the weight too, the fear, the helplessness, and yet they still need to go to school, do their homework, play their sports and behave. Children who witness their loved one battling ALS bear a heavy burden.
Saturday we had a soccer game, it was the first really cold day this fall, very windy. We made it to the field for warm ups and began the game. My son was out of sorts when the game began, the first 10 minutes he just seemed flat, then he came off the field with a bad attitude and an unwillingness to follow the directions Bert gave. The game just didn't go well, our opponent out played us and we lost. I was frustrated with my son, I wanted him to play the way I knew he could. On the way home I lectured him, I told him that it took time from his dad and from me to get him to practice and games. I said if he was going to act like he didn't care I wasn't giving anymore of my time. I told him I was angry, that he needed to be a team player, that he embarrassed me when he behaved with a bad attitude. I told him to go to his room when he got home. He didn't say a word, Bert didn't say a word. I ranted.
Later when I calmed down I felt sorry that I had blown up, I went upstairs to talk to my son. He was in bed snuggled under his covers. I told him I was sorry for yelling at him. He replied "don't be sorry mom, I deserved to be yelled at." I looked at him confused and asked him what he wanted to do, did he want to play, did he want his dad to coach? He replied "yes I want to play and yes I want dad to coach." I asked why he behaved the way he did, why he refused to even try and he simply said "Mom, everything is so hard for us and I was just cold and tired." All I could do was hold my boy, for I knew what he meant, our life is hard right now, we are all tired. He hugged me back and said matter-of-factly "I really need tights and a hat for next game and I am sorry for not playing hard enough."
I realized that the soccer game win or lose was not the most important thing right then, what was most important was for me to nurture my son to try and take some of his burden. To sympathize with his exhaustion. Being a kid is hard, being a kid who's dad has ALS is even harder.
I have made an observation as Bert's ALS has progresses: as ALS progresses, and everything gets more difficult and slows or stops life keeps speeding along, people around us are zipping to and fro from work and school to activity and social life, the hurry of everything does not stop for this disease. It sometimes feels surreal to me. And although I do not expect people to understand what this journey is like, I must remind myself that it is my responsibility to take care of my husband and my children. I have the control to slow things down as much as possible for us so that we can live in the moment, enjoy our time together, and learn from this journey. Our motto: always a positive has been a challenge recently, some days that positive is hard to find. Later that evening I found it though...I passed by the family room and glimpsed my two boys watching a basketball game together...Bert in the recliner and my son sitting beside him in the wheelchair, feet propped up on the walker. They were in deep discussion about sports. For that moment life did slow down and they were just a father and his son watching the game together.
~Jennifer
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