After I dragged my bloated body into work, I realized that I haven't written in over ten days (that, and the gentle prodding of my old friend, Steve). Sorry. I know everyone has been waiting with baited breath for the next chapter of the Malchus saga to begin.
Julie's folks arrived in town on Wednesday night and we had a very low key Thanksgiving this year. It was a pleasant change of coarse from our usual holiday celebrations. As custom, we wind up at Budd and Karyn's with Karyn's family and 2000 other people in one house. I love having so many people around. Still, it was very peaceful to just hang with our small family. I know that Julie was excited to cook the Turkey and command the kitchen with her mom. We have never had Thanksgiving at our home, so I was excited, too.
I did something potentially stupid by purchasing a ticket for the April Springsteen show in Ananheim. We can't afford it, but it's Springsteen. I figure, if I don't go to Starbucks for the next 100 days, I will have saved the $100 it cost to buy the ticket. That's my logic and I'm sticking with it.
Jake's been having a real hard time with his breathers lately. He's really struggling with having to take the time to do them. He fights having to sit down and do them and calls them boring. In addition, he tries to end his vest treatment before the 14 minutes is up. Julie and I have reamined strong. It's hard, though. He gets so upset and sometime breaks into tears. You can see it in his expression that he just wants to be like other kids who get to sleep in to a reasonable hour and just eat, get dressed and go to school. God, how I wish his life could be that way, too.
Then I think of the thousands of other kids with CF who do not have the good health that Jake has. And I think about this 12 year old girl that Julie has been reading about who was so healthy one day then caught some nast virus and is waiting for new lungs. Last week, a new study published in The New England Journal of Medicine found that lung transplantation in children with cystic fibrosis does not increase survival for the majority of the children studied. You read something like that and your heart just stops.
How do you fight a monster that is able to sneak around your defenses and weaken you when you least expect it. I don't know. I only know that we have to keep up the treatments and we have to be dilegent. We have to do our job and parents to make sure that Jake is healthy no matter what.
One day at a time, you know? It's like, I don't see the light at the end of the tunnel anymore. I only see my feet being illuminated. That light is there, but I'm too busy to worry about if were going to make it because I can only do this one day at a time.
Sometimes I wish I were more spiritual. Sometimes I wish I could turn my heart over to God so freely like the millions of people you read about each day. What's stopping me? I don't know. Instead of relying on my faith, I sit around and worry, pulling my eyebrows out one hair at a time.
I'm so tired of this bullshit. It's not fair.
It's just not fair.
Aloha
Julie's folks arrived in town on Wednesday night and we had a very low key Thanksgiving this year. It was a pleasant change of coarse from our usual holiday celebrations. As custom, we wind up at Budd and Karyn's with Karyn's family and 2000 other people in one house. I love having so many people around. Still, it was very peaceful to just hang with our small family. I know that Julie was excited to cook the Turkey and command the kitchen with her mom. We have never had Thanksgiving at our home, so I was excited, too.
I did something potentially stupid by purchasing a ticket for the April Springsteen show in Ananheim. We can't afford it, but it's Springsteen. I figure, if I don't go to Starbucks for the next 100 days, I will have saved the $100 it cost to buy the ticket. That's my logic and I'm sticking with it.
Jake's been having a real hard time with his breathers lately. He's really struggling with having to take the time to do them. He fights having to sit down and do them and calls them boring. In addition, he tries to end his vest treatment before the 14 minutes is up. Julie and I have reamined strong. It's hard, though. He gets so upset and sometime breaks into tears. You can see it in his expression that he just wants to be like other kids who get to sleep in to a reasonable hour and just eat, get dressed and go to school. God, how I wish his life could be that way, too.
Then I think of the thousands of other kids with CF who do not have the good health that Jake has. And I think about this 12 year old girl that Julie has been reading about who was so healthy one day then caught some nast virus and is waiting for new lungs. Last week, a new study published in The New England Journal of Medicine found that lung transplantation in children with cystic fibrosis does not increase survival for the majority of the children studied. You read something like that and your heart just stops.
How do you fight a monster that is able to sneak around your defenses and weaken you when you least expect it. I don't know. I only know that we have to keep up the treatments and we have to be dilegent. We have to do our job and parents to make sure that Jake is healthy no matter what.
One day at a time, you know? It's like, I don't see the light at the end of the tunnel anymore. I only see my feet being illuminated. That light is there, but I'm too busy to worry about if were going to make it because I can only do this one day at a time.
Sometimes I wish I were more spiritual. Sometimes I wish I could turn my heart over to God so freely like the millions of people you read about each day. What's stopping me? I don't know. Instead of relying on my faith, I sit around and worry, pulling my eyebrows out one hair at a time.
I'm so tired of this bullshit. It's not fair.
It's just not fair.
Aloha
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