How long does it take to write a sentence? I'm a slow writer. It took me about 5 seconds to write the following sentence, which is how I started this post: Liam is a-ok. She's resting comfortably. She got a good night sleep. She got a blood transfusion during the night, plus plasma. It took almost as fast for Liam's condition to change 180 degrees. Now (10-11 Sunday am) she's in pain again. Nobody knows why or how it came about. And, now (6-8 Sunday PM) she's comfortable again (and I'm being really careful with this term), but it can change any minute.
If I was a sports reporter I could see myself sitting in the box and writing a play-by-play description of the hospital room. Otherwise it sometimes too difficult to update the blog. For example:
She's breathing well right now. Things are moving in the right direction.
BUT OH NO, what a dramatic change....she's now carrying the ball toward her own goal line.
And, things are under control again.
But oh, how the game changes course again....she's all OOOOWWWWIE, her pulse rate and blood pressure is sky high.....
etc,. etc., etc. You get the point: things are just too crazy. They change by the minute from white to black and back to white.
The art of science
Most Drs take the scientific approach - as they should. But sometimes, this approach is missing the point a bit. Let me give you an example:
When Liam doesn't feel good, she doesn't know how to express herself. It's mostly OOOOWWWWW, it hurts, Mommy. So when a certain Dr comes and starts poking her, he/she asks:
Where does it hurt?
Liam: OWWW
Dr: can you tell me where it hurts?
Liam: OWWW
Dr: Liam, can you please tell me where it hurts?
Liam: OWWW
Dr: does it hurt in the belly?
Liam: Yes
At that point the Dr leaves it alone. He/she got their answer. Now let me give you an example of me conversing with Liam:
Me: Liam, does it hurt in your belly or your head?
Liam: head
Me: Does it hurt in your head or your belly?
Liam: belly
Ah, hmmm, what do you do with that kind of answer?
Here's another example:
Liam: OWWW, OWWW, OWWW
A Dr comes in and greets Liam. He/she hears the OWWW. They then touch Liam's leg lightly, as part of the greeting. (Remember, Liam was already in pain when the Dr stepped in. So coincidentally, when the Dr touches her leg, anothetr OWWW comes out. It has nothing to do with the leg.)
Dr: Oh, your leg is owie?
And I'm sitting nearby and thinking DOH!!!
Camp Simcha
I was never a religious person and I doubt I ever will be one. For a matter of fact, I have an agenda against all religions of the world. The discussion is too large to present in this post. When you grow up as a secular Jew in Israel, it's easy to not like the Jewish religious institutes. I could go on and on on this subject - maybe in a separate post.
But there's one Jewish religious oranizationg that I think very highly of. Not so much because of its religious affiliation, but more for what it does with special need kids. This organization, Chai Lifeline, is the organizer of Camp Simcha (the "ch" in Chai and Simcha is pronounced like the "kh" in Kazakhstan; Chai in Hebrew means "alive" or "life"; Simcha means happiness or joy).
4-5 years ago we were introduced to Camp Simcha. To make a long story short, Liam ended up there for a 2-weeks sleep away camp. It was not easy for us to send a severely disabled child who was heavily depended on us, her parents, and was never been taken care of by others, to this camp. Two weeks away from us? In a another state? Away from her Drs? Taken care by complete strangers? How would they care for her? How would they change her, feed her, communicate with her? How would she feel? It was a heavy decision to make (and the fact that the camp is an orthodox Jewish one did not add any comfort to the decision, if you know what I mean.)
But all these worries proved nonesense. Liam had the time of her life. Not only the camp provided excellent care, she experienced things that she would never had experienced otherwise. And all of that with Liam's well being as the guideline for all activities. I will never forget the smile on her face when we met her at the airport. She was exhausted from a day of travel, but couldn't erase the Simcha she was wrapped in - nor did she try to. She almost came back a different person. You should see the expression on her face every time she watches the DVD from camp. (Thinking of this in retrospect, Liam IS simcha. There's a perfect match between the camp's goals and theme and Liam's personality.) Anyway, Liam returned to Camp Simcha every summer since. There's a strong bond between her and her councelors. The care - and joy - is genuine. I don't have enough good words for this organization.
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A few weeks ago, while in the hospital, we applied to the Make A Wish Foundation (look it up). We applied with them before, but back then Liam was not sick enough. Now she is. How ironic. So anyway, we met with the MAWF people and several options for a wish were discussed: a house on the beach, a Disney resort, etc.
Had we chose any of these, Liam would have traveled in an ambulance and with a nurse - all expenses paid, including accommodations etc. But, something didn't feel right. Liam can hardly go out to the garden, how would we schlep her 300-400 miles to the beach? So then Meitav came up with this great idea:
Liam LOVES camp. Obviously she can't go there because (a) of her condition and (b) there's no camp in the winter. So how about bringing camp to Liam?
And that's exactly what happened eventually. Last Sunday, 2/21/2010, Liam had a mini-Camp Simcha. the MAWF and Simcha colaborated in organizing a special event for Liam, right here in the hospital. MAWF provided the funding; Simcha provided the simcha. MAWF flew in 3 of her counselors and organized a bunch of other stuff - a room, food, decoration, and more. The idea was two-fold: bring to Liam the joy of camp with no effort on her side; and do it where she's medically safe and personally feels safe.
These two organizations did a WONDERFUL job. I'm pretty disabled when it comes to describing decoration and party themes, etc. But it seems like everybody had a great fun. Everybody except for.....Liam herself. She had a not-so-great of a day. She hardly opened here eyes. Of course, nobody could have predicted it when the plans were made. Oh well, it is what it is. But Rachel reported that later that evening, when Liam was back in her own bed, it seems like things from that day sunk in. She smiled and joked and re-lived the day.
The Laundry Basket Guide to happy marriage
You wanna tell me you never heard this revelation from me before? Ok, you're in for a life lesson. There are two secrets to a happy marriage life. We will start from the 2nd, the most difficult one:
At the end of each laundry basket you fold, leave a bunch of folded items outside in a visible place. That would prove that you contributed to the effort.
The easy one:
Get your wife a boyfriend. A gay one. He will take care of her: buy her flowers, take her out to lunch and shopping, hear her bitching. You're completely off the hook. Even better: the farther you get, the better. And all of this at no cost and at zero risk. With all the time in the world for football and golf. I mean, really, can you think of a better deal?
But you'd be fooling yourself if you think this wonderful arrangement could last for the long term. If you want it to continue, there's no other choice but get her a few additional gay boyfriends. Still a small price to pay for free and unlimited football and golf.
Well, you heard it here. I tried it and it's working. I give you the tip for free. Don't just thank me - drop some beer on my porch.
Now, if I could only have these boyfriends fold laundry too, life would be perfect. Development is in progress.
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