Monday, November 9, 2009

EPIC PART II (Kind Of...)

We are home from the hospital.  Charlotte is doing well.  She and Daddy are settling in on the couch in their Bronco outfits getting ready to watch Monday Night Footbal.  Below is Roger's post that he has been working on for the majority of the day.  Read on...

Not really Epic Part II but still long.

“Everything is on its way to somewhere else.”

Here we are looking at the probability of going home soon.  CJ woke up about 5:30 and the moment she saw me, she reached out and wanted to kiss my nose!

She's doing very well this morning, eating well and all that.  The only side effects of the surgery so far are an eye that pulls inward a little and a very stiff neck.  Neuro has already been up to see her and they say the eye thing is most probably a little swelling or maybe a nerve got "touched" during surgery.  She moves it well all around so the Doc wasn't too concerned and they'll be back to check up on her later.

The stiff neck was expected.  I've done my poor man's physical therapy on her head and left hand a little to try and help.  She doesn't necessarily like it but she tolerates me interrupting her Mary Poppins or Curious George or whatever she's watching at the moment.

They sent up her dose of steroid and it tasted awful (I checked).  So I didn't make her take it.  We have some good tasting stuff at home that we had brought down because one doctor said we could but the pharmacy refused to let us give it to her (I mean, what's it going to do to her?).  I appealed to them again and they finally agreed to let us give her ours.  Rachel had to turn around and go back home to get it but I think it's worth it to A) get it in her to help with the healing of the surgery, and B) not turn her taking it into a crisis situation. So everything is cool at the moment.

Miss Heather, Wyatt's mom, is bringing CJ a milkshake-shake this morning.  She got to talk to Wyatt on the phone for a bit this morning which was really nice.  He's certainly talking a lot these days.

Now for some heavier stuff...

As things progress, I think it's typical for people to fall into despair.  This is a horrible situation and both Rachel and I have cried more than we thought possible.  Personally, I have only "broken down" a couple times since we got the news on Friday but there seems to be a constant drip from the eyes like a faucet that can't be completely shut off and my heart constantly aches.  I know our friends and family are feeling awful as well.

But, and this is very important to me, as sad as this situation is, we can't despair. My spirituality runs slightly different than most but it's still very deep.  I am thoroughly convinced that things happen for a reason.  There has to be something holding the universe together; otherwise, according to chaos theory and quantum physics, there's no reason why we shouldn't all suddenly turn into random objects like ashtrays and lawn mowers or have VWs growing out of our heads at strange angles.  We have no idea the reasons but they are there.  My latest mantra is: Don't try to find the reason in the darkness of the moment.  The reason will show itself eventually.  Right now there is no reason. It's my version of faith.

That doesn't mean we're sitting back and just letting things happen.  We are still discussing options with Dr. Kahn, Dr. Wolff, and Dr. Tye.  They are reaching out, discussing CJ's case with other colleagues and we will be seeking out alternative therapies like acupressure and chiropractic if for no other purpose than to manage any pain.  The absolute main goal is for Charlotte to be as comfortable and functional as long as possible.

We appreciate the occasional message letting us know of treatment options or a doctor who does a certain kind of therapy but rest assured, between all of our medical and therapeutic professional friends, we have explored possible avenues everywhere you could think of.  Dr. Kahn and Dr. Wolff especially have discussed CJ's case with other Doctors all over the country.  The last chemo protocol and the Proton therapy were both cutting edge research/technology, all with high degrees of success.  None of it worked.  Anything is possible but we're not going to delude ourselves as painful as that may be.

Which brings me back to my discussion on spirituality and the word of the day, "Grace."  It's a word that has been floating around in my brain for quite a while and I'm still digesting it but I feel I'm finally starting to get the slightest glimpse if it's true meaning.  "Kung Fu" is one of my favorite TV shows of all time and it was full of little tidbits of wisdom including one I still use.  "When a man finds his true path, Heaven is gentle." That, very loosely, is what grace means to me. It's that Michael Brecker concert back in 1988 on the University of Miami patio that reached deep inside me and showed me what power music could wield.  It's that bartender at the Invershin Inn in Scotland who pulled out a guitar and reignited my passion for music.  It's the "Home" feeling I get when I'm teaching at Romp n' Roll.  It's the conviction I feel that CJ came here intentionally; that she chose us to be her parents because of some purpose way beyond our ability to comprehend. It's asking the network for a pony ride for Charlotte and getting 50 offers in an hour.

Here's something else...In Robert Schimmel's book, Cancer on $5 a Day (Chemo Not Included), he mentioned his son who had died from cancer some years before. He said his son was an old soul and that he believes they had known each other before.  It's easy for me to imagine that for Charlotte considering how easily she learns things and the amazingly deep connection CJ and I share but the one thing keeping me from truly believing that is the pure wonder with which she seems to view everything.  Like a very young soul.

So my take on it is that she is a "wondering/wandering" soul who came here this time to learn stuff and to touch peoples' hearts.  And she has done both extremely well.  I know I'm biased and (trying not to sound trite) that ALL children are special but I look at all the people Charlotte has touched, even those who have only heard about her or just seen a photograph, and I can't help but be convinced that she has something extra special about her.  How many of you fell in love with her the moment you saw/met her?  It's more than just chemical or visual.  She has SOMETHING about her and I can't tell you how privileged (full of grace?) I feel to have been allowed to be her parent; to watch her “collect” people’s hearts and see that special something in action.

And because of all the hearts CJ has touched, I'm fully convinced that CJ's Thumbs Up Foundation is going to be absolutely huge.  She will continue to collect people’s hearts long after she’s gone on to the next part of her journey and families in similar situations as ours will have at least one more place to turn for support.  Could that be a reason for all this? Odds are it’s just another step towards somewhere else.

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