Quantum Media

There is a phenomenon in the world of Quantum Mechanics called wave function collapse. I can barely understand it, let alone explain it very eloquently, but this collapse seems to occur when wee tiny bits of matter change their patterns of “behavior” during observation. I won’t elaborate on the whole double-slit experiment – but the general idea is that the wee particles or electrons were doing one thing, creating waves and interference patterns – which, by the way, was pretty astounding and confounding. But the even more astounding thing was that when the brainiacs (physicists) decided to get a closer look at the electrons by setting up a measuring device – and then all of a sudden the electrons behaved entirely differently. True story.

So, this is what comes to mind when I am being bombarded by the news media’s sound-bites about whatever is the current event of the moment. Last month it was Tiger’s tales of woe. Before that we had the D.C. gate crashers. And Balloon Boy. And remember the diaper-wearing-astronaut?

Now about Tiger Woods. I’m just as confused and saddened by these developments as anyone else. Compared to so many public figures, he really seemed like someone to admire, to look up to. His whole story, complete with moral outlook is still untold. And yet so many are quick to write him off. Maybe he deserves the vilification, maybe not. But what really gets me is the media’s involvement. A respected Boston radio station ran one of their many polls for the listening audience; “can Tiger Woods make a comeback?”

Hell, I wanted to shout at the radio – “Not after all these stories you keep running!!!!”

And, coincidently, 60% of the responders said that they will not be able to look at Woods in the same way.

Ack, the media has a job to do and all, but when my usual outlets start acting like TMZ, it’s too much to bear. The schadenfreude is clear and getting worse. Oy. I’d ramble on about that, but maybe another time.

Synchronicity, Gratitude and Beyond

I do believe in synchronicity. In fate. In higher powers. I have seen this poster in Life Alive, a local restaurant. Not only did it make me fall in love with the restaurant even more, but I put this on my list of things to search out. Literally, I took pen and jotted down, "find "How to Build a Community Poster." That notation, along with "get more kitty litter", "call the bank", and "kill viruses on Mike's computer" sat quiet, waiting for action until this morning.

OK, I have not jogged out to my nearest poster store, and I have not ordered it online (yet?) But I have not let the timing of recent events slip by unnoticed - I rejoice in what God is putting in front of me.

Last night Dave and I attended the presentation of Rachel's Challenge at the high school. The program was led by a young man named Luke from Denver, CO. He is a good friend of Craig Scott, who was nearly killed at the Columbine shooting. Craig's sister was Rachel Scott, the very first victim on that horrible day. He also lost two good friends at the hands of the killers.

You can check the site for the particulars, and please do, but the main point of the project is to spread kindness. Young Rachel was a strong believer in reaching out to others, to show that no one needs to be alone, and that it's easier to spread kindness than hate.

This was an overwhelming experience, even with Tom's previews. He had attended the same assembly yesterday, and was not only tremendously impressed with the presentation, he was impressed by his fellow students. "Mom, everyone was SO...quiet."

There are other things coming to my attention that involve the concepts of charity, altruism, kindness, gratitude...it is not just a coincidence.

Speaking of gratitude, one of the cool things that I'm referring to is the site, The Whole 9. I read many great essays on the site, and there was one piece, a write up about the photographer Sebastiao Salgado. The author included one of Salgado's image, a heartbreaking, but beautiful image of a naked boy. A starved naked boy. This boy was standing next to a tree that was as naked and stark as he was. It was done in B&W, and it looked almost like it was set in snow, the sand was that white.

The comments following contained the word gratitude, many were immediately so thankful as they were reminded of their own blessings. That's important.

But what kept haunting me was this thought...

"It can't stop at gratitude."

Clarity

Those dreaded "Dog Days of Summer" have finally departed, leaving us with the some truly gorgeous weather.

As the thick humidity clears from the air , I find that my mind functions a little bit better. Now this is not a out and out guarantee of brilliance, functionality,or organization on my part, but it sure does feel good.

New Beginnings, New Name?

Love this time of year. Although the calendar shows time is beginning its final descent into the realm of End of Year Clean-up, for me - and maybe because I still have school age children - it feels like a new beginning.

And here's my proposal. I want to change the name of this Blog. I have not liked the name for years now, but was hesitant to change. So maybe all you fine readers can help suggest a new name. Maybe I should hold a contest, and do this reality show style with creating teams and stirring up egos.

No, forget the ego stuff, but you may work in groups. : ) Discuss.

What Does it Feel Like?

(Note- Previously published at Blogcritics Magazine on September 28, 2009)

Or translated: How are you doing? How are you coping?

Of course, we must begin with the neurotic disclaimer - coming from the part of me that must fend off criticism or doubt before it surfaces - is that Tom's story is not my first visit to hell. No exaggerations, but I've been in the shit before.

And so, what does it feel like? How do I manage this whole illness thing?

Mostly not very well, or so it seems.

I walk through the kitchen, fairly numb to the impossible to clean floor, which looks every bit as impossible, grit trapped in relentless pockmarks that make a once white surface a collection of dingy stains. But what really catches my attention is the sight of the full pill cup.

Not just full, but seemingly abandoned. This means meds not taken on schedule and this observation reaches up and smacks me across the head, hard, with the dire message that I'm perhaps not a very good mother. And inside I think, "see, you shouldn't have spent so much time with your email, or you would have been on top of this." Even if the previous 40 minute email session was a chance for me to vent, rant, cry, and even laugh with some good souls, the pure organic goodness of that unburdening is trampled on, muddied with my own constant guilt of not measuring up.

That's one thing.

Another thing is exhaustion. Physical, mental, emotional. Nothing that parents - OK, humans - don't typically deal with anyway, but this is still unexpected. Especially the end of the day collapse, I feel like I'm the mother of very little babies all over again. When the meal is done, the dishes are cleared, all I want to do is melt into the television or a good book - and then I remember. I have to get the night pills ready. Or I have to prepare the tube feed. And really, it's not all on me to do this. D is very capable and is usually ready to do what needs to be done on top of his own crazy exhaustion. But that's not the point.

The point is - those extra steps - they suck. We shouldn't have to deal with pills, weekly blood draws, infusion bags, tube flushes, stool checks. We shouldn't have to refinance the house because money suddenly got so tight, we shouldn't have to run around collecting signatures, and forms, forms, forms, forms to apply for additional insurance.

We shouldn't have weeks piled with clinic visits in Boston, nurse visits to the house, social worker visits, clergy visits, Make-A-Wish visits. Make-A-Wish? Isn't that for real sick kids? Kids who might die? Indeed, it is.

And the worst really is that whole "might die" scenario.

All parents go through this, from the time they tip-toed out of the nursery, to the time they tossed over the car keys, to the time that their very precious child said, "Mom? I've enlisted", parents hold collective breaths all over the world, willing that nothing wicked this way will come. Never, ever. They chant the universal pleaseDearGodkeepthemsafe prayer until their rosaries and prayer beads are worn smooth from anguish and hope.

Tom could have died last February when he had the esophageal bleed. He could have died this June when his kidneys failed. He could have died each time he had a simple endoscopy, in fact one simple procedure resulted in an unexpected overnight stay, because his lungs weren't responding well during recovery. And he could have died during the seven hour surgery he had in 2007.

So, naturally, of course, this brings us up to the big T. The transplant. The waiting. The uncertainty. Tom does appreciate on the surface how significant his "listing" is. He knows in theory that the surgery will help his life dramatically. But he's remarked, "Everyone keeps congratulating me - but they don't have to go through it."

And so next week Tom starts his freshman year at Dracut High, he'll have to "go through" this new school year complete with ninth grade anxieties and an NG tube taped to his cheek.

And how am I doing? I'm a mess like any other parent, yet I'm damn proud of that kid.

What Gives Hope

(Published first on PNN.com - the Personal News Network)

Note: I started writing this back in March - and finally find time and inspiration to finish.

I was at the doctor's office yesterday, it's a family practice so the patients come in all age groups, young and old, male and female. I was there for some funky female issues, nothing horribly upsetting, but still somewhat concerning. So, before actually being seen, I was OK, but feeling a bit apprehensive. And in walks this tiny little girl with her mother. The wee thing had to have been not much more than two years old, if that. (Rather like Cindy-Lou-Who, who was No Bigger Than Two - just as cute, if not cuter). She had this adorable little poncho and an adorable little purse. And her poncho hood was still on, which gave her a sort of Kewpie-esque /Snow Babies appearance.

While her mother checked in at the window, young "Cindy-Lou" toddled over to near where I was sitting, attracted to a toy house. " 'ouse, 'ouse", she said. I smiled and confirmed, "house!" Then, too soon, I was called in for my appointment.

My own appointment went smoothly enough, but even knowing my issues were most likely going to be OK, it was still nerve-wracking to be setting up further appointments for an ultrasound and then a biopsy. Once those dates were set I was ready to leave. And out comes little "Cindy-Lou", still no bigger than two, but even cuter than before. She sported a smile that was killer. And the energy between her and her mother was tangible and lovely.

And if you know me at all, you know our family's story - how the Young Prince has been battling liver disease, but at this very moment was healthy and in school (for a nice change). You also know that the Crown Prince was dealing with a new diagnosis of diabetes. In fact, at that very moment he was with his dad at the Joslin Clinic in Boston, having been called in on a somewhat urgent basis, based on the blood numbers that his doctor had sent them.

So our lives had been shaken, our family momentum had been thrown quite off course, and I was trying to be calm about every bit of it. And if you know me - am I ever calm, really? So, it was an effort.

But this little girl, this tiny sweetie carried a wave of pure goodness with her, it was hard to feel anything but happy in her presence. I imagine even still following her and her mom around, not just to observe, but to maybe absorb the good juju that she was blessed with. Little "Cindy-Lou" gave me a boost that stays with me even now.

Fast forward to June 9. Tom has been sick. He was sick in May with a GI thing (in the hospital for three days) He never really felt very well once he was discharged, he still had odd symptoms that brought us back to his pediatrician the very next day. Within a week he developed a cholangitis infection, and directly on the heels of that news, a cellulitis infection in his foot. Eventually the two antibiotics did their work, and he felt a little better.

Better, but not fantastic. His liver docs stressed that he needed to eat better, he'd lost maybe ten pounds in just a short time, so we struggled with that during the end of May. But he just kept feeling worse, and by early June he was eating even less. And on the 9th we were on our way to Boston, knowing he was probably going to be admitted for fluids and testing, and perhaps insertion of a feeding tube.

We were driving through Boston, I think just merging onto Brookline Avenue, when I saw this small gaggle of school children on an outing with their teachers. It was a rainy drizzly day, and the kids were all wearing the most damn adorable rain gear. Boys and girls alike, they were like little water-repellent jewels splashing their way through the afternoon. Polka-dot boots, striped slickers, brilliant little backpacks; the sight of them made me yearn for my old camera, and my old life when I used to take lots and lots of photos of scenes like this.

The reality is though, that those kids - just like little "Cindy" - have stayed with me. Seeing the utter naked joy that floated over these bright souls like little auras of hope was a kind of a tonic. A mini-salvation in the midst of real worry.

We perhaps laugh in our jaded adult ways, at the innocence of children. Not out of meanness, but sadness that we lost our innocence, and dearly wish for it back. But behind the laughter, we have hope. Hope that these sweet precious babies never lose that natural buoyancy of curiosity, laughter, and love. Hope that their goodness will rub off on us. Hope that somehow, life will get better, and even in the midst of the nastiest of nasty days, there are still good and sweet things in our lives that must be recognized for what they are.

Little blossoms of hope.

Making My Wish

A few weeks ago we learned that Tom was going to be eligible for a wish from the Mass. chapter of the Make-a-Wish foundation. He has not formulated his wish yet, but he's meeting with his "Wish Team" next week, and I imagine it should be interesting.

And the whole fantasy granting process has always been something folks indulge in - as a day-dreaming exercise. If you won the lottery, what would you do with the winnings? If you had a Fairy Godmother, what would you have her provide? When I was a kid we used to just riff on the "how would you spend a night if locked in the Burlington Mall?" theme. (Who knew that Kevin James aka Paul Blart would be able to answer that one?)

As Tom's illness has progressed, many family members and friends have offered help. Much of the time I appreciated the offers, but didn't know what to ask for. Clueless! I'm not crazy about other people interacting with my laundry, and it seems silly to ask someone to remind us to get the oil changed in our vehicles. But it does open up the fantasy floodgates.

I'd like a personal secretary/assistant. Not only to remind us to get the oil changed, maybe to take the vehicles themselves to our mechanics and get it done (and it's a fantasy, so the assistant can pay for it too). I'd also like a pedicure. The beautician/manicurist shouldn't mind a little nail fungus, I'm hoping. Ideally the assistant would have already driven me to my podiatrist to renew the scrip for the fungal stuff that I should have taken care of a year ago.

Personal Trainer...yeah, that's the ticket. I have not been to karate since late May or early June, because of Tom being in the hospital, or us being on vacation, or just being overwhelmed with life and forgetting how to put one foot in front of the other. Fat rolls have given birth to new rolls. Ugh. But with my desire to work out comes the fact that I can't right now, due to the funky bizarre knife wound. I'd love for the trainer to also be a cook and nutritionist. I'd reallllly love for someone to recreate the goodness that is "The Swami", a brown rice vegan affair that is at the top of my list as my go-to take out food.

Now back to that assistant. Maybe he or she is fully magical like Mary Poppins, or maybe they have that snarky sensibility that comes with the head wag and the "Oh no girl-friend, you are NOT wearing that outfit in public" type shtick, but either way - being financially savvy would be a real plus. The paperwork is a pain. Seriously.

Oh, and they need to re-order the enteral feeding supplies for Tom too. Make it snappy!