Another Monday, another visit to Dr. Good. I like this guy. Besides getting my back all set for the marathon, he's a pretty cool guy to converse with (except when he makes me listen to Michael Bolton during the roller machines. I mean.... Come On!).
I have to get up early and take Vill to the airport early tomorrow morning. He's off to the Bahamas for a movie shoot. He's going to be gone for at least two weeks. They're not sure if he's going back after the holidays. I can't imagine going that long without seeing Julie and the kids. Besides just being out of the country, I don't think I would like being away that long. A week is tolerable. But after that it would get VERY depressing.
I guess that's the price you pay working in the entertainment industry. For now, I have this semi-secure desk job that keeps me close to home. I'm not sure how we'll handle me being away should that opportunity ever arise. There is a big part of me that really wants to be shooting more movies, like, NOW. But the hours would be horrific.
Changing the subject, I have to say that one of the greatest things about this whole experience has been how I've been able to hear from friends and family across the country. In particular, I'm speaking about my cousin Kenny. Kenny is a few years older than me and we never really had much to talk about. He's actually older than all of the kids on my side of the family. Kenny is the relative who had a son pass away from CF when I was a kid. I must admit, I don't remember much about his son, Brandon, except that he was sick a lot. Back then I didn't know what CF was and it wasn't really explained to any of us. Needless to say, no one told us that the disease did not have a cure.
Brandon was born years before the gene was discovered, so he didn't have the same medicines that Jacob has. His life was much tougher than Jake's. And when Brandon passed away, I was too young to really comprehend what had happened. It's strange to say that now. It's strange to admit that I didn't have a clue how fragile life was. I guess it was easier because we only saw those Malchus' once a year. That's a lame excuse, I know.
But through everything that happened, those two words, Cystic Fibrosis, stuck in my memory.
When Jacob was in the UCLA ICU the weekend he was born, he didn't appear to be the sickest child in the ward. There were kids with open head wounds and heart conditions lying right next to him. He looked like he was fine and he had begun to drink milk. It wasn't until the final hour we were there that the surgeon who was going to operate on him mentioned that a CF test was supposed to have been done. And that's when the bell went off in my head. "Cystic Fibrosis? Did he say Cystic Fibrosis?"
Of all of the people who have been the most supportive to my family over the past two years, I feel that the most encouraging words I receive are from my cousin Kenny. I have often said in this journal that I can't imagine what it would be like to lose a child. Well, Kenny has. He lost his son to Cystic Fibrosis. He has witnessed the horrors of this disease first person. And I will say this; he was one of the first people who called us the day we learned of Jacob's diagnosis.
You have to understand, before that day two years ago, I could not tell you the last time I had had any communication with Kenny. But here he was calling us, telling us to keep our chins up and telling us that he was optimistic that they would find a cure. Those words meant more to me than anyone else's during that time. And now that I've been keeping this log and training for this marathon, Kenny has continually checked in on what I'm writing and he has continually sent me emails full of encouragement and support.
I have to say that for this limited time, the way all of my family and friends have come together has been the most enlightening aspect of the whole ordeal. And to be able to communicate frequently with my cousins whom I rarely see, that is just fantastic. It's like, you always know there are good people out there. I don't think I would want these folks a part of my life if I didn't know that deep down they were big hearted. But these past six months have proven what I always believed, ten fold. These past six months have really opened my eyes and heart to the greatness in this world and the possibilities to overcome and cure Cystic Fibrosis.
Three more days until we leave.
Aloha.
I have to get up early and take Vill to the airport early tomorrow morning. He's off to the Bahamas for a movie shoot. He's going to be gone for at least two weeks. They're not sure if he's going back after the holidays. I can't imagine going that long without seeing Julie and the kids. Besides just being out of the country, I don't think I would like being away that long. A week is tolerable. But after that it would get VERY depressing.
I guess that's the price you pay working in the entertainment industry. For now, I have this semi-secure desk job that keeps me close to home. I'm not sure how we'll handle me being away should that opportunity ever arise. There is a big part of me that really wants to be shooting more movies, like, NOW. But the hours would be horrific.
Changing the subject, I have to say that one of the greatest things about this whole experience has been how I've been able to hear from friends and family across the country. In particular, I'm speaking about my cousin Kenny. Kenny is a few years older than me and we never really had much to talk about. He's actually older than all of the kids on my side of the family. Kenny is the relative who had a son pass away from CF when I was a kid. I must admit, I don't remember much about his son, Brandon, except that he was sick a lot. Back then I didn't know what CF was and it wasn't really explained to any of us. Needless to say, no one told us that the disease did not have a cure.
Brandon was born years before the gene was discovered, so he didn't have the same medicines that Jacob has. His life was much tougher than Jake's. And when Brandon passed away, I was too young to really comprehend what had happened. It's strange to say that now. It's strange to admit that I didn't have a clue how fragile life was. I guess it was easier because we only saw those Malchus' once a year. That's a lame excuse, I know.
But through everything that happened, those two words, Cystic Fibrosis, stuck in my memory.
When Jacob was in the UCLA ICU the weekend he was born, he didn't appear to be the sickest child in the ward. There were kids with open head wounds and heart conditions lying right next to him. He looked like he was fine and he had begun to drink milk. It wasn't until the final hour we were there that the surgeon who was going to operate on him mentioned that a CF test was supposed to have been done. And that's when the bell went off in my head. "Cystic Fibrosis? Did he say Cystic Fibrosis?"
Of all of the people who have been the most supportive to my family over the past two years, I feel that the most encouraging words I receive are from my cousin Kenny. I have often said in this journal that I can't imagine what it would be like to lose a child. Well, Kenny has. He lost his son to Cystic Fibrosis. He has witnessed the horrors of this disease first person. And I will say this; he was one of the first people who called us the day we learned of Jacob's diagnosis.
You have to understand, before that day two years ago, I could not tell you the last time I had had any communication with Kenny. But here he was calling us, telling us to keep our chins up and telling us that he was optimistic that they would find a cure. Those words meant more to me than anyone else's during that time. And now that I've been keeping this log and training for this marathon, Kenny has continually checked in on what I'm writing and he has continually sent me emails full of encouragement and support.
I have to say that for this limited time, the way all of my family and friends have come together has been the most enlightening aspect of the whole ordeal. And to be able to communicate frequently with my cousins whom I rarely see, that is just fantastic. It's like, you always know there are good people out there. I don't think I would want these folks a part of my life if I didn't know that deep down they were big hearted. But these past six months have proven what I always believed, ten fold. These past six months have really opened my eyes and heart to the greatness in this world and the possibilities to overcome and cure Cystic Fibrosis.
Three more days until we leave.
Aloha.
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