to everyone who's commented or emailed their love, condolences and support; here or on Evan's journal. It really has been helpful. thanks to you all, and I hope you are all having a wonderful weekend with your own loved ones!
Friday, November 24, 2006
Sunday, November 19, 2006
untitled...
...because there's no title for this that makes sense to me.
We have just gotten back from an emergency trip south. One of my younger brothers (I have four) collapsed two weeks ago, and although he was revived on the way to the hospital, he never regained consciousness and died a few days later. He was just 30, and was one of the most amazing people I have ever known. I can't even go into how much he had to overcome during his 3 decades, because you wouldn't even believe it. But the 26 years he spent with our family (we adopted him at the age of four) were 26 years the doctors thought he wouldn't even have. And they were 26 years (I can't tell you much about those first four, but I gather they sucked the most) that most people couldn't have handled with the grace and aplomb he eventually developed.
In his words (written for a Japanese site a friend of his was writing about him):
Hello. I'm Josh. This is my history. When I was born, I was born with a disease called Cystic Fibrosis. My doctors told my parents that I wouldn't live to see my 5th birthday. Thanks to modern advances in treatment and medication, I'm still alive today.
At age 25, my C.F. became critical. The only thing that would save my life was a double lung transplant. I almost didn't make it because in the end, my lungs failed. I received my lungs at the last moment. Now I'm 30 yrs. Everyday I wake up, is a wonderful day. I'm so happy that I'm still alive! Now, I always make the most of everyday! Life is great!
Summing up 30 years of incredibly difficult health problems like that is so very, very Josh! And the 11 months he had after his double lung transplant were an amazing gift that he was grateful for every day. He really did say, again and again, "Every day I wake up is a good day".
What he also doesn't mention is that one of the reasons he got his transplant was that for 2 years, while his health was failing dramatically, he fought for a bill in Florida that would close a loophole preventing adult cystic fibrosis patients from getting the lung transplants that Medicaid had already appropriated funds for. The bill was passed on the last day of the 2005 session and has already saved the lives of several young adults in Florida with CF.
Unfortunately, he apparently developed a pulmonary embolism (we'll never know what from, or if it even had anything to do with his transplant) and it killed him before he ever got to completely re-adjust to his new life and lungs.
I don't want you to think he was some saintly do-gooder or anything though. He had a lot of interests that were purely selfish -- he was crazy, I mean crazy about Macross (transforming his Yamato Valkyrie collection back into "fighter" form from "battroid" form so they could be put away was a serious challenge); he drew, he built models, he played bass, he ran around with his friends and did all kinds of things. And the stories I could tell you about his younger days....oh my. But while he was decidedly human, he did fight for not just his own life, but for many other people's as well.
I am proud to have known him, and sorry that Emily won't. In his honor, a few resources:
I know organ donation is a touchy subject, because it comes back to that whole creepy "thinking about death" thing that no-one likes to do. But without donated lungs, he wouldn't have even had the extra year. And he himself was able to donate organs and save three lives last week. If you can't bring yourself to think about it much, please consider just checking off that box on your driver's license.
If you are willing to think about these things in depth, look into an advance directive -- not only can you specify what and how you would donate, you can make your wishes known on a number of (yes, touchy) subjects. I cannot tell you what peace of mind our family had because Josh had filled out one of these Five Wishes forms. We knew exactly what he would have wanted at every turn. I will be filling one of those out myself. Well, when I get up the nerve to think about all that stuff I will.
And again, if you have anything that really needs to be protected, kids or intellectual property or just things that you do want to go to the right home/person/place, think about a will. Icky, I know. (And actually, my brother didn't have or need one -- he was single with no kids, and did not have a family that does things like fight over people's stuff when they die. So, no, not everyone needs one.)
Anyway, that's about all I can really say about it right now. We're just trying to wrap our heads around the whole thing and get back to work, if not back to normal. I am going to take some time to think about things and what I am doing with myself, so I don't know how much or what I'll be posting soon. (As you may have noticed, even Evan is speechless right now.) Thanks for sticking with me this long, and hopefully we'll see you soon.
We have just gotten back from an emergency trip south. One of my younger brothers (I have four) collapsed two weeks ago, and although he was revived on the way to the hospital, he never regained consciousness and died a few days later. He was just 30, and was one of the most amazing people I have ever known. I can't even go into how much he had to overcome during his 3 decades, because you wouldn't even believe it. But the 26 years he spent with our family (we adopted him at the age of four) were 26 years the doctors thought he wouldn't even have. And they were 26 years (I can't tell you much about those first four, but I gather they sucked the most) that most people couldn't have handled with the grace and aplomb he eventually developed.
In his words (written for a Japanese site a friend of his was writing about him):
Hello. I'm Josh. This is my history. When I was born, I was born with a disease called Cystic Fibrosis. My doctors told my parents that I wouldn't live to see my 5th birthday. Thanks to modern advances in treatment and medication, I'm still alive today.
At age 25, my C.F. became critical. The only thing that would save my life was a double lung transplant. I almost didn't make it because in the end, my lungs failed. I received my lungs at the last moment. Now I'm 30 yrs. Everyday I wake up, is a wonderful day. I'm so happy that I'm still alive! Now, I always make the most of everyday! Life is great!
Summing up 30 years of incredibly difficult health problems like that is so very, very Josh! And the 11 months he had after his double lung transplant were an amazing gift that he was grateful for every day. He really did say, again and again, "Every day I wake up is a good day".
What he also doesn't mention is that one of the reasons he got his transplant was that for 2 years, while his health was failing dramatically, he fought for a bill in Florida that would close a loophole preventing adult cystic fibrosis patients from getting the lung transplants that Medicaid had already appropriated funds for. The bill was passed on the last day of the 2005 session and has already saved the lives of several young adults in Florida with CF.
Unfortunately, he apparently developed a pulmonary embolism (we'll never know what from, or if it even had anything to do with his transplant) and it killed him before he ever got to completely re-adjust to his new life and lungs.
I don't want you to think he was some saintly do-gooder or anything though. He had a lot of interests that were purely selfish -- he was crazy, I mean crazy about Macross (transforming his Yamato Valkyrie collection back into "fighter" form from "battroid" form so they could be put away was a serious challenge); he drew, he built models, he played bass, he ran around with his friends and did all kinds of things. And the stories I could tell you about his younger days....oh my. But while he was decidedly human, he did fight for not just his own life, but for many other people's as well.
I am proud to have known him, and sorry that Emily won't. In his honor, a few resources:
I know organ donation is a touchy subject, because it comes back to that whole creepy "thinking about death" thing that no-one likes to do. But without donated lungs, he wouldn't have even had the extra year. And he himself was able to donate organs and save three lives last week. If you can't bring yourself to think about it much, please consider just checking off that box on your driver's license.
If you are willing to think about these things in depth, look into an advance directive -- not only can you specify what and how you would donate, you can make your wishes known on a number of (yes, touchy) subjects. I cannot tell you what peace of mind our family had because Josh had filled out one of these Five Wishes forms. We knew exactly what he would have wanted at every turn. I will be filling one of those out myself. Well, when I get up the nerve to think about all that stuff I will.
And again, if you have anything that really needs to be protected, kids or intellectual property or just things that you do want to go to the right home/person/place, think about a will. Icky, I know. (And actually, my brother didn't have or need one -- he was single with no kids, and did not have a family that does things like fight over people's stuff when they die. So, no, not everyone needs one.)
Anyway, that's about all I can really say about it right now. We're just trying to wrap our heads around the whole thing and get back to work, if not back to normal. I am going to take some time to think about things and what I am doing with myself, so I don't know how much or what I'll be posting soon. (As you may have noticed, even Evan is speechless right now.) Thanks for sticking with me this long, and hopefully we'll see you soon.
Wednesday, November 1, 2006
halloween baby!
Emily's 2nd Halloween, and her first one with a slight clue what was going on. I made her this Cheburashka costume, which has great significance to us but which I knew would be interpreted by most people as a teddy bear (although a few people thought she was a puppy!) I had a serious moment of doubt working on this costume...I didn't think I could pull it off since I was winging most of it. But then everything clicked and it ended up working out fine. Furry felt is pretty awesome, although I feel like washing it would destroy it completely. And I'm not sure how comfortable it actually was -- but she didn't complain a bit, and even kept her hands inside the little paw-mittens!
We took her to the mall for their big trick-or-treat thing. She liked looking at the other kids a lot, didn't like adults talking to her so much, and ended up pretty overwhelmed:
She sure looked cute though! Next year: real door-to-door trick-or-treating! Well, maybe.
Best costumes at the mall: two little asian boys dressed as yellow-track-suit Bruce Lee and a Shaolin Monk. Their mom was really happy that Evan recognized both costumes!
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