True Colors

For whoever has been following Tom’s journey these last five years, you know I’ve used the Homeland Security color-coded “threat monitor” to symbolize how things are going with his health issues.

He’s been from green to red and all the colors in between. There have been lots of calmer green and blue times, like a beautiful ocean of health, for which we are all grateful. Extremely grateful. But the last few months have become muddled and murky.

As you may or may not recall, he went through a terrible roller-coaster series of events and complications in a five month period in 2009, from February to July. Too much to recount in this post, but one incident comes to mind now.

Tom had been admitted in June of 2009 with kidney failure. He was given a feeding tube. It was all a bit dramatic. But finally he was being discharged, and he was getting dressed, we were filling out paperwork, and things were OK-ish. Then, one of the doctors came into his room, closed the door behind her and said, “Sit down, I need to talk to you all.”

If ever there was an example of a WTF moment, this was it.

“I need to tell you that one of the staff that has been taking care of Tom during his stay here was sent home with flu-like symptoms and Tom needs to start on an antibiotic right away.”

OK, our hearts started beating again, we started breathing again, and I almost wanted to strangle the serious and concerned doctor for scaring the shit out of us. (And seriously, what color on the chart would we ascribe to this moment?)

Are you fucking kidding me? OK, sure, whatever the flu du jour was at that point shouldn’t be taken lightly, but come ON. After all he’s been though not only this week, but in the last few months…this is such a huge deal right now? 

But I didn’t say that. We asked the right questions and continued the discharge process and Tom was fine, no flu-like symptoms followed him home.

And in the intervening years between then and now, he’s still had lots of ups and downs and drama (like a transplant) and lots of cool things, and LOTS OF LOVE.

Ahh, the love. There have been an amazing collection of people expressing amazing feelings of love and support for Tom, and doing some incredible and selfless things. From sending a simple get well card, to sending mountains of gifts – it’s all been so uplifting.

Our network of support, our village, keeps expanding and it’s wildly gratifying. Every time we show up at an ALF event, for example, we feel everyone’s joy for Tom’s health victories, and even their pride in his overall accomplishments, whether it’s getting off a medication, or getting on the honor roll at school – we really can feel the love. It’s tangible. It’s good.

And the same thing happens at family reunions, or a routine trip to his pediatrician for an annual checkup (they rave over his continued improvement), or church – it’s very cool.

Yet, and here is my frail human weariness kicking in, when things go awry, as they have gone quite scarily awry since August, when I have to give a poor health report for Tom, I feel like I’m letting down so many people.

“Oh now Mary, don’t feel that way”, you think. “It’s not like you can help it or are causing it” – and hell, you’re right! But I do feel exactly that. And mind you – no one gives me that impression, that they are disappointed in me, or Tom.

I don’t know exactly why I feel this way, but sometimes I have to imagine that people may only have a limited bandwidth for concern, and maybe they’d like to cross a few people off their lists of Folks to Worry About.

If you add social media to the mix, that’s a whole new way to examine the sharing of news, asking for support, giving support, and then alternately feeling overwhelmed with a whole news feed of illness or – or joy – and the whole pockmarked spectrum of human emotion in between. 

And I’ve got to allow that some of this electronic network, the followers or friends or connections, are probably just plain tired of reading the latest blurbs about my Young Prince. Enough already, we get the point, you’ve got a sick kid, yaddah yaddah, the story’s just too darn old!

 

But the reality is most of this angst is created in my head.

So when I do give an honest report on Tom’s setbacks, 99% of the time, the responses are filled with genuine concern. Old friends and new, they care about where Tom is on the color chart. So, I have to trust in that care and love that others continue to shower over us.

Speaking of showers, after the clouds part and the sun cautiously begins to shine again, every now and then comes a rainbow. Beauty after the storm, or in spite of it, that gift is what we receive no matter what kind of news, no matter where Tom falls on the chart.

A beautiful rainbow of true colors.

Happy Valentines Day

When we got married,

This was a card I made last year, it's still pretty apt one year later, with the exception of a certain TV show.










We had  

Then we had

And real life set in. So, sometimes we argued or said:










But that's OK. We're still here and we have 

And each other.

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."

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.

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.

Love and Loss

I read something today that was sublime. The most rational yet dreamy treatise on love and loss and acceptance - by horror author Dean Koontz.

From Odd Hours:

"Grief can destroy you - or focus you. You can decide a relationship was all for nothing if it had to end in death, and you alone. Or you can realize that every moment of it had more meaning that you dared to recognize at the time, so much meaning it scared you, and you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it. But when it's over, and you're alone, you begin to see it wasn't just a movie and a dinner together, not just watching sunsets together, not just scrubbing a floor or worrying over a high electric bill. It was everything, it was the why of life, every event and precious moment of it. The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time, you're driven to your knees not by the weight of the loss but by gratitude for what preceded the loss. And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life."