Sunday, November 19, 2006


...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.


  1. I'm so sorry. It looks like Josh had a great attitude about life. I think most of us need to make the most of everyday, just like he did. AND I made sure that DH knows I want to be an organ donor. I'm keeping you in my thoughts.

  2. Sorry to hear about your loss. Words seem a poor course of action at times like these and we wish we could do something, anything, to make things better.
    At the very least, it sounds like he lived life to its fullest and enjoyed and appreciated every minute he had. We're willing to wager that he lived more in his thirty years than a lot of people do in eighty.
    If y'all need anything, let us know.

  3. You are in my thoughts and it sounds like Josh was one kick-ass guy. Thanks for sharing him with us...

  4. I am so so so sorry for your loss. :(
    As posted above, it is a real gift that he lived every day to the fullest and obviously had a good time living each and every moment on his own terms.
    Please know that you are in my thoughts and i am burning a candle for your family's peace and strength through this incredibly difficult time. Be good to yourself and allow plenty of time to let yourself process it all. I lost my big brother when i was 15, and to this day, i still feel the ache of it....hold that hurting part gently and let yourself be loved and cared for.

  5. I'm sorry to hear about the loss in your family, Sarah. Christopher and I send our sympathies.

  6. I am so sorry, Sarah. My condolences.

  7. Healing karma to you & your loved ones, Sarah.

  8. Sarah and Evan,
    Sorry to hear of your loss. Be consoled by the fact that you and your family touched his life and made it better. My condolences.

  9. Your brother was a hero who saved lives!What an amazing life.

  10. You have my sympathy at the loss of your beloved brother. But it sounds like his passing is truly a loss for all of us--whether we knew him or not. He sounds like a very special person who will be greatly missed.

  11. Sorry for your loss. He sounded like an amazing person.

  12. We just celebrated my father's first death-day anniversary.
    Organ transplants, without a transplanted liver we would not have enjoyed the 3 most rewarding years of my life with him. People so underestimate the fact that we are all living on borrowed time, and that every extra day we are here is precious. Organs are like gold. God bless those who donate,
    My sincere sympathies.

  13. What a wonderful tribute, Sarah. I'm sorry you've lost him, but he does sound like the sort of person who made every moment count. And as we Jews say, his memory is a blessing.
    My condolences to you and your family. I'm so sorry for your loss.

  14. Sarah,
    I'm very very sorry for you and your family's loss. Your love for Josh sounds well deserved. From what you say he packed a lot of living into 30 years; those of us blessed with health feel grossly wasteful for not doing likewise. No doubt he has left his mark.
    Regards and condolences,

  15. Sarah,
    I'm very sorry to learn of your loss. My condolences to you, Evan and Emily.

  16. Sarah,
    Sorry to learn of your family's loss. Your brother sounds like an amazing person. Thanks for sharing his story and the important information about organ donation.

  17. Sarah, I'm so sorry! I hadn't checked your blog in a little while and had no idea. I'm so sorry! Thank you for sharing Josh's story with us. I will be doing one of the more detailed donor plans you mentioned. Thank you for sharing that option. I know the holidays will be so hard for you and your family. Our thoughts are with you all

  18. =( I'm so sorry about the loss of your brother. My good friend lost both of his siblings to CF and I always try to donate for CF research.
    I am an organ donor because I want to help people.
    Way to go for your brother to fight and get it passed for adults to have lung transplants!


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