Notes to Self - Under Glass

It sounds a bit maudlin, but I can identify with Sylvia Plath somewhat. I never see it descending, but at some point I realized that the bell jar is already covering my existence, creating a distorting view of the outside world. My experience of life is skewed, voices are muted through the thick, bubbled glass of situational depression.

One event that hovers outside the jar is an upcoming vacation. We're just going to the trailer on the Cape, so no airline weirdness or strange climates to consider or worry about. But still, clothes need to be washed, other details need to be attended to, and we have a whole bunch of new items to bring this time, with all of Tom's tube feeding paraphernalia. And there is still, a great deal of paperwork to take care of in the next few weeks. But the whole idea about getting ready to go seems like something not quite within my grasp. Like maybe it's an episode on a TV show that I stumbled onto. Mildly entertaining, but no identification with my real life.

But since I know that our departure is in the short future, I'm trying in my muted, bubbled over way - to make lists of things to do. Lists upon lists, and notes to myself about what to bring and what to do before we go.

Sleep is something I need to do, because health and a cheerful attitude is something I need to bring, not only on vacation, but with me everywhere.

Tears

Tears for the peony flowers, heavy on the stems from too much rain - now muddy and trampled. If my mind was present, I would have cut them and brought them in the house. But my heart is muddy and trampled and so the flowers languished in the rain and no one but God saw the blooms.

Tears for the U.S. mail. I cry when I open a bill, I cry when I open a document that asks me for more documents in order to get the process going where we'll need no more documents. And I cry when I open a card for Tom and feel the love rising from the goofy cartoons and sweet sentiments.

Damn laundry. Enough said.

Tears for the immeasurable kindness of the staff from Lakeview Jr. High. They made difficult things a little bit easier.

Tears for the words not spoken, the thoughts not expressed, and the stories not told.

I ache from the silence, I drown in the tears shed, I choke on the tears inside still.

Midnight Rambler

Well after Midnight actually.

I have not had this insomnia thing in a long time. So that's something to be thankful for.

But here it is, caused or accompanied by a dull ache in the gut. That will sort itself out come morning I expect. Morning and a cup of coffee.

But for the rest? What will sort out the worries? Worries about money, worries about Tom, worries about Mike. Even silly worries about moi! The surface health issues seem fine. Yay. But I had one of those horrible daydream musings about --- what if -- what if I was suddenly struck by a deadly staph infection and succumbed. (and we can substitute struck by a renegade truck or renegade meteor)

That would be most inconvenient. Just entirely horribly bad timing. I picture a dead me, sort of floating above myself, not unlike Patrick Swayze in Ghost, floating and full of anguish. It's never a good time really, to die. But if it were to happen right now...well I just couldn't bear it.

I see myself floating above Dave - trying to comfort and guide him to the right medical websites, pushing Tommy's health folder under his nose...screaming.."look here! Here are all the meds, the phone numbers, the notes, the scribbles, the authorizations."

Then I would try to help Tom get through whatever he needs to deal with, but in such a mournful way. Too soon, too soon. If ever there was a time to bargain with death - this would be it.

It's such a needful thing - the desire to do whatever you can do to help your child - and if you were suddenly robbed of that ability - it's beyond frustrating, it's pure torture. Really.

The Perfect Mother's Day

I'd had the perfect Mother's Day planned. Well scratch that, I never have anything really, fully planned. I have wisps of ideas and with luck and work they turn out into something tangible that sometimes doesn't suck.

And so there were some wisps and daydreams about what would constitute the perfect "day off" for me.

Sleep late, but not too late. Wake up and wander downstairs to find freshly made hot coffee and a breakfast pastry of some sort. Like a low fat corn muffin and... and some fresh fruit...yeah, that's the ticket. (Amend dream fragment to include taking thyroid pill an hour before waking up for coffee and muffin) Enjoy muffin and fruit and coffee. (Amend further to include natural morning activities that leave one feeling more...relaxed, and ready to enjoy food)

And important note - all this is done so far in solitude. The family is off in another room, playing video games or doing homework or whatever - just leaving me time to wake up without queries as to my health, or my willingness to do laundry or drive someone somewhere -- NOTHING. Just solitude and maybe some quiet jazz streaming discreetly from the dining room speakers.

And the windows are open, and with no neighbors are awake, the only sounds that the light breeze carries in are bird calls. And during this hour or so of quiet time, I'd read the paper, listen to the news on the radio, and check email. OK maybe just a little Facebook too.

The thing is, I do get these quiet mornings several times a week, time where I don't have to answer to anyone. I don't have to get dressed and go to work and worry about being late. I don't have to take someone to a bus stop or to daycare. Well, I haven't had to get a child off to school in two years, unless you count bringing The Crown Prince to some college classes. And I don't have to worry about getting to work on time - I just have to make sure that I turn the heat on in this room, and that the coffee is made. And I certainly don't have to worry about what I wear to work.

But even though these mornings are not necessarily rare, they still feel precious. And what else would I include this in my perfect, precious fantasy day? Probably a chance to sit outside in the sun, either reading or talking with whomever would want to join me. See, that's what would make this the optimum day - sacred time alone, and then sacred time with the family. And of course the family would be in the most sunshiny of moods, no arguments, no homework questions, and no illness.

Does that mean that the perfect Mother's Day would have no "Mothering" involved? Really, isn't that what the commercial fantasy is? Mom is taken to brunch, to lunch, to the theater - she's shoo'ed away from the kitchen, pointed in the direction of the chaise lounge in the pest-free garden, and she's a goddess for a while.

And that's a great image. And it's not always a fantasy. But to try to make it happen on Mother's Day, is not easy. Not when we planned to have in-laws over in the afternoon - there's the hustle and bustle of bathroom cleaning and straightening up - one can't really call the day their own when one needs to play hostess. And not when there's illness in the family.

Years ago, maybe 10 or 12, one of my boys, I think it was The Crown Prince, had a stomach bug. I have a memory of him running to the bathroom to vomit, and in his urgency, he forgot to lift the toilet top. So, you can imagine the aftermath of cleaning up a projectile mess that was intended to go into a vessel, that instead spewed with force on top of a flat surface and then sprayed out in many directions.

You're absolutely right, it was a disgusting mess. And as I remember, it was the Friday before Mother's Day weekend. I remember saying to myself with bitterness mixed with a little humor - "Happy Mother's Day to me." It wasn't my first bathroom mess and certainly not my last, but the irony of the calendar did not escape me.

And that irony was again present during this weekend.

My Tom, AKA The Young Prince, the boy with the sickness, the boy with the liver disease, the boy who is more fragile than we realized, and the boy who has surprising stores of strength, of spirit, and of love - caught a stomach bug.

He came home from school on Thursday, exhausted and complained of a mild stomach ache. He managed to eat a bit here and there, and although he stayed home on Friday, he seemed to feel a little better by late morning. He took a walk with his brother and when he came home he was wiped out again. By Friday evening he was vomiting and had diarrhea.

It continued during the evening and on Saturday morning I was calling for the GI folks in Boston. I spoke a few times that day with the on-call doc, and we decided that by Saturday afternoon he was on the mend. Fever was gone, vomiting was gone, he was asking for food. It was encouraging. Then Saturday night he was back to vomiting again, and by Sunday morning he was very miserable and asking to go to the hospital.

We took him to a local ER, and they found he was quite dehydrated. After a couple liters of fluids, he wasn't responding as well as they'd hoped, plus they found blood in his urine. They transferred him to Boston, and he was ultimately admitted for more tests and observation. The next couple of days were a jumble of worries - tests for this, tests for that, everyone had to gown-up before coming in his room, it was not horribly scary, but rather a drawn-out event of recovery tempered with many questions.

He's home now, slowly recovering, and the rest of us are trying to recover too. Some Mother's Day weekend, huh?

Yes...some Mother's Day weekend. I did what other moms - and dads - do all the time, take care of someone without thinking of thanks, without noticing the calendar. You just do it because you love that person so much that to do otherwise is not an option.

But yet my Young Prince surprised me. While we were still in the Lowell emergency room, while Tom was still nauseous and nervous - he turned to me and said..."Mom -- Happy Mother's Day -- I'm sorry I didn't say it earlier."

It really was kind of perfect.

My Own Real

This poem by John Boyle O'Reilly has been in my head recently, although the original meaning, about appreciating kindness and generosity of spirit is something I highly, highly value - the poem sparks an internal quest for my own Real.

First, the poem:

"What is the real good?"
I ask in a musing mood.

"Order," said the law court;
"Knowledge," said the school;
"Truth," said the wise man;
"Pleasure," said the fool;
"Love," said the maiden;
"Beauty," said the page;
"Freedom," said the dreamer;
"Home," said the sage;
"Fame," said the soldier;
"Equity," said the seer.
Spake my heart fully sad:
"The answer is not here."

Then within my bosom,
Softly this I heard:
"Each heart holds the secret:
'Kindness' is the word."

So, O'Reilly and I are seeking truths. What is my Real Good? What is my Real Purpose? What is my Real Truth? I won't add any more quotations, but words from another group of Irishmen are tempting to recall here - the lyrics of U2's "I Still Haven't Found what I'm Looking For"

Besides trying (and more often then not feeling like I'm failing) to be the best parent I can, what is my purpose?

I've got a pretty strong inkling that writing is a part of it. Writing to entertain, communicate, or educate, what is my real strength? Is the world best served by reading my take on all things 24 related? If so, then that is cool. That is not a bad gig at all. But I feel there's more that I can do, I feel that there's more that's expected of me, or maybe needed from me.

And oddly, I feel that my Real Good, my Real Truth relates to what O'Reilly summarized as being important in not just his life, but all our lives - kindness. That's a worthy message to pass on as often as possible.

The Dark

During the day, especially if it was a gray rainy day like today, I like to have as many lights on in the house as possible. I'm not afraid of the dark, but I need to have the lights on for other reasons. It's just a comfort, a healing thing during that winter-time light deprivation situation. And a sunny day, like yesterday is even better.

But at night, I enjoy the dark. It allows me to just be still and quiet. It allows me to appreciate the contrasting flicker of candlelight that combines with the rhythmic rain drops outside to create a meditative space in my head.

And the dark usually means that everyone else is asleep, and I can absorb and process everything that happened during the day, or during my life, whichever needs processing the most right then.

This has been a tough week. And I don't see a respite coming yet. Only what I can create myself, only what I can forcefully hold onto, or just snatch away from the powers that deny me peace of mind.

But first, I have to step into the Dark. I have to write down the worry and the worry and the worry. I have to accept the fact that there might be a seventh daily med added to the list for The Young Prince. I have to convince myself that this stupid lingering cough is just a stupid lingering cough. Sure enough the stethoscope proved clear lungs and no crackling or wheezing. But the fatigue. The lowered hemoglobin, the lowered crit, the lowered albumen. Nothing horrible, but a little lower than last time. Enough to prompt phone calls and faxes between doctor's offices.

I didnt' want this life. This ain't no fucking trip to Holland, it sure ain't fucking Italy - tell me where is this place? This world of trying to keep all the pills straight, this one has to be taken two hours after a meal, this one is only in the morning, this one is only at night, and not a full pill, not a half pill, but 3/4 of a pill. Not easy to cut up a tiny pill without turning half of it into dust. It can be done though. And cut down on the caffeine, doesn't mix well with a beta blocker. And doing the paper route, later and later every day. Hoping that the Young Prince will feel up to it this time. And he's not. Not this day.

And when we try to think ahead, to plan a vacation maybe, for the first time we realize that maybe we better not plan too far ahead. I don't want to be this fatalistic. I DON'T WANT TO BE DEBBIE DOWNER.

But the reality is that we have no fucking clue how to proceed. Oh, sure we operate on the premise that the liver function is OK. Not fantastic, but workable. There was weight gain, energy, sparkle. But slowly the jaundice showed up in early winter, again. Then the bleed in February. The ER. The two unsucessful attempts at NG intubation - and finally the third time worked. Banding procedure, ICU bed, transfusion, and another ultrasound. Then another banding procedure in March, adjusting the drugs to a tolerable level but not after losing another week of school. A bone density scan. Easy peasy, but still - one more test.

Then more sparkle, paper route on schedule, mall time with friends, homework, family... And then a cold that just won't quit. Fatigue...again.

And really, how can I handle the Crown Prince? I don't know how to even get my head around this one. OK, we got a grip on diabetes, meter, strips, lancets, Metformin - but, but...the Crown Prince does not take change very well at all. He knows that these changes are imperative. He understands it all on paper, I think. But the truth is that there cannot be a casual relationship with soda any longer. Either it's diet or it's out. There cannot be ice cream runs - just cuz. And your friends are probably not going to be very impressed by your news and just might want to eat those chips and slurp that soda in your face. And this stuff has to change very soon or there'll be a daily injection.

It's exhausting, is what it is.

So tonight I did carve out that little respite, the oaisis of Just Me and Tom watching a movie together because he didn't feel well enough to see South Pacific at the High School. I lit a bunch of candles and we had the dark, but we had the light too.

My Boys and My Boys: In the House

I wrote a blurb for tonight's My Boys season three opener here. But now I can talk about what I really thought. I can release how it was gratifying and sweet to see PJ come out of left field and open up to Bobby. And then the kiss! Here's the thing though, I'm no body language expert, but there was too much distance between them. They sounded convincing if you just saw their faces, heard their words, looked into their eyes...it was a nice moment. But panning out, they lost me a little. Over all it was a great episode. Stephanie still regrets her fling with Kenny. The boys and the mustaches were funny, and King Baby Jim Gaffigan's Andy and wife Meredith just had their second baby, little Oliver. So it's off to a good start.

And then there's my boys. They've been going through stuff, draining and all that. I've been seeing way more of the inside of doctor's offices than I'd like. But what are ya gonna do. And on a side note, watching House last night with Tom was pretty interesting, Kutner (I think?) was trying to follow the clues from a paralyzed Mos Def. Figured out that the patient's foot was itchy. And then House says (paraphrasing), "itchy feet is a sign of liver failure". Tom and I stared at each other. Weird that we actually understood what they were talking about 'sclerosing cholangitis' and the like.