There are nights I just don't want to go to bed. It's not that I'm not tired, because I am ... It's just that I feel hypervigilant, like I can never quite let down my guard or I will get swamped with all of this. I do sometimes. (Let down my guard, I mean.) I can't seem to help it. And then ... wham! It's not a good idea, I've discovered (repeatedly), to let your guard down too, too much.
I wonder what it would be like to feel safe in the world? I don't know that I've ever really felt that. I don't always (or even often) feel physically unsafe. Living out in Poedunkville, I'm far more likely to get sprayed by a skunk then to be the victim of a crime, so it's not that kind of feeling unsafe. It's just that feeling of ... precariousness, of everything being transient.
I sleep in my clothes sometimes these days. I don't know why. I just feel ... ready? Ready for what? Just ... ready. But I'm drooping. I can't stay awake much longer. I've calmed by mind with classical music and Sudoku, and there is a huge part of me that just wants to give in to sleep. But on the other side of sleep is another day. And when I get to that day, I know I will have the strength for it. It just seems like more than I can conjure up right now.
I have a dear friend who also lives a challenging life. I asked him the other day, "How do we keep on?" He said simply, "We just do." It wasn't said flippantly. It's just ... that's the truth. Plain and simple. We just do. So I think I'll take off my headphones and dry my tears and go get some sleep. Tomorrow's a new day.
Tuesday, August 14, 2007
Monday, August 13, 2007
What's Up, Doc?
Not much news here today. Mark's mom and stepdad arrived last night. As predicted, she commented on my weight within three minutes of arriving ... Sigh. The thing is, I finally have a backbone! She said, "It looks like you've filled out some since I saw you!" I said, "No, actually, I just lost eight pounds." I refuse to be neurotic about my weight, my house, my children. I don't have the energy to try to please the MIL anymore. Take me or leave me. (To her credit, she did say that I made a great chicken soup and set a fabulous table. "Where did you GET these roses?" Um ... I grew them. Right out front. If I "don't care" what she thinks of me, why did those comments feel so good? Okay, so maybe I do care a little bit ...)
She wanted to go on an outing as a family. Mark tries to be the ultimate stoic in front of his mom, but I had to intervene. I put my arm around Mark and said, "You know, Ruthie, Mark will tell you he's okay, but the truth of the matter is that outings generally land us in the hospital. He really needs this cardiac catherization, and I don't think we should do anything that would make it iffy whether or not he's able to get it." So if Mark can manage later today (he had a rough night, again), we're going to go over to the RV park for dinner and a swim later this afternoon.
--Interesting timing, here! I just got off the phone with Dr. Weiss, one of Mark's cardiologist. We were going over what's ahead. Apparently there are four possibilities, which will be decided after the results are in from the cath. 1) surgery to reduce the constriction on his pulmonary artery so that he can get more oxygen to his lungs, 2) an arterial shunt, 3) a heart transplant, or 4) continuing to medically manage symptoms as well as we can without surgery. (Number four would be the "fallback" option, if he fails to qualify for any of the above.) None of these options will "cure" Mark, but Dr. W says we might be able to buy him five years.
She wanted to go on an outing as a family. Mark tries to be the ultimate stoic in front of his mom, but I had to intervene. I put my arm around Mark and said, "You know, Ruthie, Mark will tell you he's okay, but the truth of the matter is that outings generally land us in the hospital. He really needs this cardiac catherization, and I don't think we should do anything that would make it iffy whether or not he's able to get it." So if Mark can manage later today (he had a rough night, again), we're going to go over to the RV park for dinner and a swim later this afternoon.
--Interesting timing, here! I just got off the phone with Dr. Weiss, one of Mark's cardiologist. We were going over what's ahead. Apparently there are four possibilities, which will be decided after the results are in from the cath. 1) surgery to reduce the constriction on his pulmonary artery so that he can get more oxygen to his lungs, 2) an arterial shunt, 3) a heart transplant, or 4) continuing to medically manage symptoms as well as we can without surgery. (Number four would be the "fallback" option, if he fails to qualify for any of the above.) None of these options will "cure" Mark, but Dr. W says we might be able to buy him five years.
Saturday, August 11, 2007
A Bit of Rest
Well, Mark is home again. He seems relatively comfortable for the moment, just extremely tired. He walked around Fred Meyers for about 15 minutes while we waited for his prescription, and that pretty much wiped him out. He came home and fell asleep for several hours, wandered downstairs, got a couple of cookies and went back upstairs and back to sleep.
Sounds inviting to me, honestly! I came home from the hospital just drooping with fatigue. I haven't been sleeping well, but any of you who know me well will know that's nothing new for me! I feel really bad though because I feel like I let my dear friend Andrea down. See, Brendan fell asleep in the car and stayed asleep when I moved him inside so I laid down, too. Then Andrea called. Her nephew, Boone, who just miraculously just reached his first birthday after nearly dying twice already in his short life, has come down with a virus and was headed back to the hospital. I knew this, but I just couldn't talk. I hate it when I can't be there for those I love. I don't have to "be there" for the entire world, but it is crucially important to be available, if at all possible, to those I love. And I love Andrea dearly. But she seems to have understood that I had reached my limit of "stretchability," and I DID call her when I woke up, an hour and a half later, feeling more or less human again! And Boone? He's going to be okay. Yey! That kid ... God really must have plans for his life.
I didn't do much the rest of the day. I'm reading Anne Lamott's newest book, Grace (Eventually), Thoughts on Faith. Even though I defected to the Democratic party last year, Lamott is still a little liberal for me. Okay, a LOT liberal. (I'd be considered a moderate Democrat, although Rush Limbaugh says there is no such thing, which really doesn't concern me much since I think Rush is ... never mind! Some thoughts are better kept to oneself! But back to Lamott's book ...) I just LOVE her writing because of the depth of her honesty and perception. She is a recovering addict, sober for a couple of decades now, but ... once an addict, always an addict. There's really no such thing as a recoverED addict. It's an ongoing process. And she talks so openly and honestly about her struggles, not so much with drugs and alcohol anymore, but with negative emotions, with the need to "bury" the pain that still bubbles to the surface sometimes. She talks about jealousy and loss, about parenting, about feeling inadequate, about making restitution for old wounds, for the sake of your own healing. And she's funny. SO incredibly funny. Besides my friend Libby, Lamott is the only one who makes me throw back my head and ROAR with laughter.
But in addition to reading and napping, I played a game of Assault Yahtzee with the boys. What? You've never heard of that game? Well, quite frankly, neither had I--until I saw it demonstrated in front of me. Leave it to my boys to turn combine five dice and a cardboard box with something that looked remarkably like Taekwondo. Oh, and did I mention the profusion of loud noises? Yeah, well, I guess that's kind of a given ...
And now? Now I'm drooping again, but ... I'm peaceful. I feel like sometimes I battle and battle, trying to fit life into my mold, and wear myself out trying ... and then I let go ... and let God have his way in his time and just trust that he will always give me the strength to face whatever is right in front of me. And really? That's all we have to handle--just that step right in front of us.
Sounds inviting to me, honestly! I came home from the hospital just drooping with fatigue. I haven't been sleeping well, but any of you who know me well will know that's nothing new for me! I feel really bad though because I feel like I let my dear friend Andrea down. See, Brendan fell asleep in the car and stayed asleep when I moved him inside so I laid down, too. Then Andrea called. Her nephew, Boone, who just miraculously just reached his first birthday after nearly dying twice already in his short life, has come down with a virus and was headed back to the hospital. I knew this, but I just couldn't talk. I hate it when I can't be there for those I love. I don't have to "be there" for the entire world, but it is crucially important to be available, if at all possible, to those I love. And I love Andrea dearly. But she seems to have understood that I had reached my limit of "stretchability," and I DID call her when I woke up, an hour and a half later, feeling more or less human again! And Boone? He's going to be okay. Yey! That kid ... God really must have plans for his life.
I didn't do much the rest of the day. I'm reading Anne Lamott's newest book, Grace (Eventually), Thoughts on Faith. Even though I defected to the Democratic party last year, Lamott is still a little liberal for me. Okay, a LOT liberal. (I'd be considered a moderate Democrat, although Rush Limbaugh says there is no such thing, which really doesn't concern me much since I think Rush is ... never mind! Some thoughts are better kept to oneself! But back to Lamott's book ...) I just LOVE her writing because of the depth of her honesty and perception. She is a recovering addict, sober for a couple of decades now, but ... once an addict, always an addict. There's really no such thing as a recoverED addict. It's an ongoing process. And she talks so openly and honestly about her struggles, not so much with drugs and alcohol anymore, but with negative emotions, with the need to "bury" the pain that still bubbles to the surface sometimes. She talks about jealousy and loss, about parenting, about feeling inadequate, about making restitution for old wounds, for the sake of your own healing. And she's funny. SO incredibly funny. Besides my friend Libby, Lamott is the only one who makes me throw back my head and ROAR with laughter.
But in addition to reading and napping, I played a game of Assault Yahtzee with the boys. What? You've never heard of that game? Well, quite frankly, neither had I--until I saw it demonstrated in front of me. Leave it to my boys to turn combine five dice and a cardboard box with something that looked remarkably like Taekwondo. Oh, and did I mention the profusion of loud noises? Yeah, well, I guess that's kind of a given ...
And now? Now I'm drooping again, but ... I'm peaceful. I feel like sometimes I battle and battle, trying to fit life into my mold, and wear myself out trying ... and then I let go ... and let God have his way in his time and just trust that he will always give me the strength to face whatever is right in front of me. And really? That's all we have to handle--just that step right in front of us.
Friday, August 10, 2007
Sudden Change
Well, Mark is back in the hospital. He had a syncopal episode last night after I had fallen asleep. (In other words, he passed out just long enough to fall down.) Jason took him to the ER, and I stayed home with the boys. When I heard from him about 7:30, he was in severe pain and the doctor wouldn't give him anything more than Tylenol. I called and talked to his nurse, Andrea, who is an absolute sweetie. She said her hands were tied, but "allowed" for the fact that a patient's family had the prerogative to push for better care if they didn't feel they were receiving what they needed. She put me through to the Doc, and I got him to agree to at least call and have a chat with the specialists at OHSU. When I talked to Mark again about an hour later, he said that they had decided to admit him.
But .... the big "but"... No more narcotics. Even the cardiologists, who have encouraged us time and again to go to the ER for pain relief, have suddenly cut him off. We don't know why. But they have also moved up his cardiac catheterization to Wednesday. We have to be there at 6:30 a.m. After that, they will decide what procedures he might be eligible to relieve some of his symptoms.
In addition to his pain, he is throwing a lot of PVCs (heart arrhythmias), which hurt quite a bit but are apparently benign. His BP is a bit high but stable. His body temperature is low. 95 degrees. I looked up what that could mean, but there are any number of possibilities, and nobody is rushing around like the sky is falling, so I assume it's okay for now.
I talked with the hospitalogist before I left today, and we worked out a narcotics-free plan that will (we hope) enable him at least to sleep.
But .... the big "but"... No more narcotics. Even the cardiologists, who have encouraged us time and again to go to the ER for pain relief, have suddenly cut him off. We don't know why. But they have also moved up his cardiac catheterization to Wednesday. We have to be there at 6:30 a.m. After that, they will decide what procedures he might be eligible to relieve some of his symptoms.
In addition to his pain, he is throwing a lot of PVCs (heart arrhythmias), which hurt quite a bit but are apparently benign. His BP is a bit high but stable. His body temperature is low. 95 degrees. I looked up what that could mean, but there are any number of possibilities, and nobody is rushing around like the sky is falling, so I assume it's okay for now.
I talked with the hospitalogist before I left today, and we worked out a narcotics-free plan that will (we hope) enable him at least to sleep.
Thursday, August 9, 2007
Unexpected News
We got a call from one of Mark's doctors this afternoon. I had gone out to take Kaitlyn over to the Sweeney's. (She's going backpacking with them over in the Bend area for three days. I thank God for that family. They are the reason Kaitlyn is having a more or less normal childhood. Or ... more normal than she would otherwise! They take her all over the place with them, pay for her to go to camp, stuff like that. And they just love her up. Well, it goes the other way, too--just without the money aspect. I love their daughter Shawne to pieces. She is SUCH a character, and I couldn't ask for a better best friend for my daughter. A while back, Shawne called me her "other mom." All right! I'll take it!)
But I've gotten totally off track again, haven't I? I was saying how I went to drop Kaitlyn off at their house and when I got back, Mark came out of the house, looking a little stunned. It turns out that Dr. Weiss, from OHSU, had called. They--as in, the whole team, all six doctors--want to see him on Wednesday in their offices. Within a couple of weeks, they want to do a cardiac catheterization (since the one that was done a couple of years ago at St. Vincent's was botched). They are thinking, apparently, that they are going to do surgery to open up the oxygen flow to Mark's lungs. I'm not sure how they plan to do this. I'm almost certain it would involve removing the band on his pulmonary artery that was supposed to have been removed years ago, but somebody forgot. (How do people forget this kind of thing?) I had been under the impression that it couldn't be removed now, but ... maybe it can? Or ... maybe they're thinking of doing something else?
I'm not even going to go into how I feel about all of this because I have too many confused and contradictory feelings. Mark is clearly nervous, and I certainly don't blame him for that. His docs are excellent, but there is always some risk with this kind of thing. And I have to think that there could be quite a lot of risk involved, but ... it might do some good. I think ... a certain amount of risk is warranted for a chance at improving his life. But I can't honestly say that I'm not nervous, too. And I'm not the one going under the knife! Well, one step at a time, right? Right.
But I've gotten totally off track again, haven't I? I was saying how I went to drop Kaitlyn off at their house and when I got back, Mark came out of the house, looking a little stunned. It turns out that Dr. Weiss, from OHSU, had called. They--as in, the whole team, all six doctors--want to see him on Wednesday in their offices. Within a couple of weeks, they want to do a cardiac catheterization (since the one that was done a couple of years ago at St. Vincent's was botched). They are thinking, apparently, that they are going to do surgery to open up the oxygen flow to Mark's lungs. I'm not sure how they plan to do this. I'm almost certain it would involve removing the band on his pulmonary artery that was supposed to have been removed years ago, but somebody forgot. (How do people forget this kind of thing?) I had been under the impression that it couldn't be removed now, but ... maybe it can? Or ... maybe they're thinking of doing something else?
I'm not even going to go into how I feel about all of this because I have too many confused and contradictory feelings. Mark is clearly nervous, and I certainly don't blame him for that. His docs are excellent, but there is always some risk with this kind of thing. And I have to think that there could be quite a lot of risk involved, but ... it might do some good. I think ... a certain amount of risk is warranted for a chance at improving his life. But I can't honestly say that I'm not nervous, too. And I'm not the one going under the knife! Well, one step at a time, right? Right.
Tuesday, August 7, 2007
Blackberries, International Loans, and a Bit of Writing
I have blackberry thorns embedded in the bottoms of both of my flip-flops. I looked up from the computer screen about 7:00 and decided to indulge Brendan's begging with a trip to the berry bushes. What is it about berry picking that is so addictive? It's like playing Pacman. I am SO not into video games, but Pacman is a different story. I start gobbling those dots, and I just can't stop! I thought of that feeling as I reached for "just one more patch" of berries. We came back with a good sized bowl, some of which I'm now eating with Cheerios. (Why can't we always eat that way? If I lived on my own, it would be cereal and soup and ice cream. Oh, and the occasional salad. Anyway! I'm getting off track.)
I really wasn't staring at the computer screen constantly today. We were in the hospital last night, so I slept in until 9:00 this morning. Then I spent a half hour reading an article in Sojourners about how some Christians are calling for a return to the principles of the year of Jubilee, in which all debts were forgiven. (This year is, actually, a year of Jubilee in the Jewish calendar.) This article was discussing the fact that some of the countries which most need help--Haiti, Kenya--are struggling to pay back just the interest on loans that wealthier nations (the U.S. included) made to them while they were under the control of corrupt dictators who took the vast majority of the money for themselves. They can't even start paying back the principal, and the vast amounts of money that are going out to pay back the interest alone could be far better used under the new governments to pay for health care and education and other services. But instead the poor people are paying for the sins of their former "dictators."
But again, I digress. After I woke up enough, I got to work on my new assignment. Of course, I had to get up once or twice (or twenty times) to tend to kids, etc., but most of the day I did spend working on the first ten groups of my current (okay, so it's my only!) assignment. I formatted and edited and battled with those #$%% grids. Sorry, Rod, if you're reading this! I didn't mean to swear at your lovely grids, but those things are freaking ORNERY! Well, when I got to dinner time and went to look back over my beautifully finished groups, I found ... only eight. One, thank goodness, had relocated to my email folder and was easily persuaded to join his brothers on the desktop. But the other--the one with most of the grids?--yeah, well ... they had turned into gibberish. Nothing I did could make it speak English again. So I started over. I got a headache from staring at the screen and still ... you know what I thought? I thought, "This is great! I love doing this! I love working for myself, feeling like I'm putting one foot in front of the other and doing something for myself, for my family, something that (with a lot of work and some divine blessing) could, eventually, help pull us out of this hole." It feels so good to be doing something concrete to improve our lives.
I really wasn't staring at the computer screen constantly today. We were in the hospital last night, so I slept in until 9:00 this morning. Then I spent a half hour reading an article in Sojourners about how some Christians are calling for a return to the principles of the year of Jubilee, in which all debts were forgiven. (This year is, actually, a year of Jubilee in the Jewish calendar.) This article was discussing the fact that some of the countries which most need help--Haiti, Kenya--are struggling to pay back just the interest on loans that wealthier nations (the U.S. included) made to them while they were under the control of corrupt dictators who took the vast majority of the money for themselves. They can't even start paying back the principal, and the vast amounts of money that are going out to pay back the interest alone could be far better used under the new governments to pay for health care and education and other services. But instead the poor people are paying for the sins of their former "dictators."
But again, I digress. After I woke up enough, I got to work on my new assignment. Of course, I had to get up once or twice (or twenty times) to tend to kids, etc., but most of the day I did spend working on the first ten groups of my current (okay, so it's my only!) assignment. I formatted and edited and battled with those #$%% grids. Sorry, Rod, if you're reading this! I didn't mean to swear at your lovely grids, but those things are freaking ORNERY! Well, when I got to dinner time and went to look back over my beautifully finished groups, I found ... only eight. One, thank goodness, had relocated to my email folder and was easily persuaded to join his brothers on the desktop. But the other--the one with most of the grids?--yeah, well ... they had turned into gibberish. Nothing I did could make it speak English again. So I started over. I got a headache from staring at the screen and still ... you know what I thought? I thought, "This is great! I love doing this! I love working for myself, feeling like I'm putting one foot in front of the other and doing something for myself, for my family, something that (with a lot of work and some divine blessing) could, eventually, help pull us out of this hole." It feels so good to be doing something concrete to improve our lives.
Saturday, August 4, 2007
It's Official!
Well, folks, my business is official. As of about five minutes ago, Dot the I Writing Service has an official number and slot in the computers down in Salem. (For those of you who didn't know that I have a writing service, click http://www.dot-the-i-writingservice.com/default.aspx to check out my website.) I had dragged my feet on registering my business because of the $50.oo fee to do so, but I must fork out money in order to be paid, so ... here goes! Also, I have my first client! Hoping and praying that this job will be just the first of many.
I know I haven't written much lately, but there really hasn't been much to write! Mark hasn't been feeling well, but hasn't been too terribly bad either. (Three evenings in the ER last week for pain management, but that's nothing new.) We've been (until yesterday) incredibly broke. Beyond broke. (I took our account down to $2.oo when I paid the water bill, but forgot about the auto-withdrawal of my life insurance. Dang! Nothing like starting the month $50 in the hole due to fees.) So, without funds to even do so much as buy gas, we had a very uneventful week.
Our anniversary came and went without much to report. Becca took the kids, and Mark and I had a special dinner alone. It was kind of weird at first! Without the kids there to drive the conversation, we had to think a bit to come up with things to talk about. Unless we wanted to talk about the kids, of course, but I wanted to stretch a little beyond that well worn topic! It was nice, though. It's SO easy for a couple to just become "Mommy" and "Daddy."
What else? Nothing really. I've been writing up a storm. I've decided that this is the year I break in. Don't ask me why. I just feel it in my gut. Of course, it may be indigestion. I guess we'll see!
I know I haven't written much lately, but there really hasn't been much to write! Mark hasn't been feeling well, but hasn't been too terribly bad either. (Three evenings in the ER last week for pain management, but that's nothing new.) We've been (until yesterday) incredibly broke. Beyond broke. (I took our account down to $2.oo when I paid the water bill, but forgot about the auto-withdrawal of my life insurance. Dang! Nothing like starting the month $50 in the hole due to fees.) So, without funds to even do so much as buy gas, we had a very uneventful week.
Our anniversary came and went without much to report. Becca took the kids, and Mark and I had a special dinner alone. It was kind of weird at first! Without the kids there to drive the conversation, we had to think a bit to come up with things to talk about. Unless we wanted to talk about the kids, of course, but I wanted to stretch a little beyond that well worn topic! It was nice, though. It's SO easy for a couple to just become "Mommy" and "Daddy."
What else? Nothing really. I've been writing up a storm. I've decided that this is the year I break in. Don't ask me why. I just feel it in my gut. Of course, it may be indigestion. I guess we'll see!
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