Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Tuesday, September 21, 2010

Hospital

It seems there truly is no way to get out of two weeks of treatment for meningitis. Today I started to feel badly for being so hard on the doctors about it all. Those poor doctors, they just can't win! Back in the spring, we were upset with them for not doing more to help Joel. Now we are annoyed at them for doing too much, being too careful! As much as I wanted Joel to come home so badly, I do understand that they must take every precaution, so I'm learning to live with another prolonged hospital stay.

It's hard though. Today he was ever so sweet, lying there and babbling to Steve and I, content and smiling. I just wanted to scoop him up in my arms and never let him go. And of course, even night and every morning that empty crib is a grim future, the bars on the crib like the grimace of an empty skull with the life inside absent... a sad way to wake up, no?

And did I mention that it turns out that yes, Joel DID sustain a fracture, if you remember back a few blogs where I was sharing about my anxieties about his fragility. And about how he started to cry one night when he moved wrong somehow? Well, he does have a fracture, and it must be slightly worse than the one he had on the other side, based on the fact that this time they gave him a little half cast. I forget the correct name for it. It is, literally, half a cast, with his arm wrapped into it, so it actually looks pretty comfy. And I feel much better now, when I have to lift him or move him. It really did seem he was in discomfort quite a bit from being lifted or moved too much.

We are upping his vit. D and adding a bit of calcium to his "diet." We'll see if that helps.

So far, no one has noticed any night time seizures in the hospital. Which means he for sure hasn't had any bouts lasting more than an hour, as they check him about every hour. Maybe, maybe, when I take him home, it will be without the night time seizures acting up. Here's hoping.

I have always loved to people watch, and hospitals are also a great place to do that, though of course the mall or the airport are a lot more fun, and have a lot less sadness. You will see all sorts of faces. Faces absolutely fascinate me.

There are long faces and round faces. There are large noses, snub noses, noses with a "roman" bump. Chins that are square. Chins that recede. Double chins. Tiny ears and elephant ears and funny-looking ears with weird lobes or squiggles. Close-set eyes, big eyes, wide-spaced eyes. Heavy eyebrows and no eyebrows and everything in the middle, even uni-brows. Moles, freckles, wrinkles, laugh lines, scars, you name it.

But every one has one thing in common. Every single face has two beautiful eyes. Really. If you stop looking at eyebrows and eyelashes and spacing and eye make-up or whatever, and just look into the pupils, surrounding by the beautiful crystal of the iris, you will see. Eyes are really beautiful. I have never seen any that weren't.

And the beautiful eyes, set in a unique face, all have a story, and no where will you find so many stories as sitting in a hospital and watching the people go by. You should try it sometime. Just go to the cafeteria, or find a bench in a busy hallway by admitting somewhere and just watch the people go by. It is fascinating, and it is also often sad, for of course, hospital stories can be so.

One day while I walked down the halls, I heard them call a code blue in the children's play area of Cancer Care. I stood to the side as running steps welled up behind me and a flying figure passed me, not once but several times. And I almost cried, right there in the hallway, for I thought "Somewhere there, in the play area I've sat in with Joel, somewhere there is a parent who is having a very bad day."

A couple days ago I rode down the elevator with a woman in tears as she spoke to her friends about when the autopsy would be done so she could have her baby back. I cried then, too, silently. Her little boy had been on the same floor as Joel, I looked at the "Thank-you" plaque later on. He was only a year old.

Today, there was a couple in the Ronald McDonald family room who were sharing their story. Their son had been in the hospital for ten years. He had been born with Cerebral Palsy. Then there was a bus accident on the way home from school, where he hadn't been strapped in properly, which led to a damaged neck. Later, there was an additional problem with how his neck had been immobilized, somehow screws had come out. In the end, this child had ended up with a permanent trach and ventilator, paralysed from the neck down, but still able to smile at them. And twice a day while they changed his trach tube, he could say Momma, or Daddy. His parents spoke of him with love and pride.

And that story hit home to me, more than ever, how every where you go, someone has a sad story, and often it's even sadder than your own. It's really good to remember to walk around and really look people in the eye. Sometimes the stories there will surprise you. One thing I know, from my own experience: It feels good to have someone SEE you. Not just see you. I mean SEE you. Look into your eyes and acknowledge, even for a moment, that you are a fellow human being, with a story of your own. A story worth hearing.

Sometimes I wonder if we should train ourselves in a true "higher education." Perhaps we should all have to pass a course on being empathetic, or, for lack of a better word: humane. If I taught that course, I'd make every pupil sit for a few hours in a busy hospital and watch the stories, and really see the people who carry them, in their eyes.

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