No, I have not committed a felony. [Well, I did sort of run into a pick-up truck while trying to get into a parking spot at the grocery store last week, and after inspecting the truck I went on to my shopping without leaving a note or anything. I don't know if that's a felony, and the truck looked fine, so....it wasn't parked very well, anyway.]
The kind of "conviction" I'm talking about is the guilt I would feel if I did actually spend the 40 days of Lent reading only the Bible. In a previous post I mentioned that a couple from my church had put this idea out as an activity for the 40 days of Lent. I'm an extremely avid reader, so any project having to do with reading will always catch my eye. But I've spent a good amount of time, since I first found out about this exercise, thinking about the reasons why I hesitate to commit. And one reason that gradually rose to the surface is this: If I spend that much time reading only the Bible, for sure and certain I am going to be very much convicted of all the "human-nature crimes" I commit on a daily basis. Such as? Well, being impatient and angry and sarcastic with my children. Being disrespectful of my husband. Being judgemental. Oh, and also the big one, not treating others as I would like to be treated. It is quite possible that all the ways I fall far short of modeling my life and actions after what God intended would become embarrassingly more clear, the more time I spent reading only the Bible.
There is also an element of fear in approaching this exercise! I know that sounds odd, but if this exercise is truly done in a prayerful way, and the person doing it really welcomes God's message into their heart in the process.....how can they arrive at day 40 and not be a different or changed person??? That's what I'm afraid of. What kind of person will I be at the other end of this? Will I turn into the dreaded "evangelical Bible-thumper"? I guess The Bible Challenge could be taken on as merely an intellectual exercise, sort of a "check the Bible off my lifetime reading list" thing, and in so doing I would probably remain relatively unaffected...but I don't know if I'm that kind of person. I mean, this is THE BIBLE we're talking about here, it would seem impossible to read it in an intellectually dry way.
There's another reason that I hesitate to join up for this reading activity. The Bible and I are not strangers at all, but to only read the Bible...well. That means not reading any other books, or the comics, or the many blogs I "lurk" on including the ones I list on my own blog! No magazines, either. It probably also means that, when I'm working on one of my several knit/crochet projects, I can't simultaneously listen to a downloaded book on my IPod. Does it also mean I can't listen to my book-on-tape in the car? If I have the Bible on a book-on-tape (or on CD), is that okay? I'm not sure if the couple that thought of this has a similar book addiction, or if they read blogs, or listen to books on an IPod, or have a Facebook account, so they may not have thought of these things. This is the verbiage about this exercise (called "The Bible Feast") from our church's blog:
"It is exactly one month until Ash Wednesday...the first day of Lent, so it seems fitting to post about the Feast on this day. What is the Feast? This year, our family is going to take on the challenge of reading only the Bible for the 40 days of Lent. That’s right…no newspapers, magazines, novels and other books, devotionals, etc. which take up our recreational reading time. We are inviting you to join us in this adventure not only for some much needed encouragement, support and accountability but also because we know God will richly bless our time spent with Him in His Word. (This also is a type of fast, since we're fasting from non-Biblical reading material, but I'd rather focus on what we're filling ourselves up with instead of what we're "denying" ourselves)." So I guess it does specifically say "recreational reading", which covers just about all the reading/listen-reading I do.
That's going to be tough to not do for 40 days. Like I said, I read a lot. Going to the library and bookstores is one of my favorite things to do. There are a handful of blogs which I check in on every day, sometimes more than once. And where do things like knitting/crocheting books, and the online fiber-crafts group I just joined, fit in? Probably in the recreational area! Thinking about this makes 40 days seem like a really, really long time!
On the other hand.....reading has become sort of an "addiction" for me. Or maybe I can put it another way and say that reading/going to the library/visiting bookstores has led me to simultaneously spend money I shouldn't be spending, and procrastinate regarding my responsibilities. There are far more books piled up in my house than I will have time to read at any point in the near future. I have noticed that to have these piles around actually causes me a kind of low-grade anxiety, because they start to represent One More Thing I Am Not Getting Done. When I do actually buy books, I have found myself mixing the new ones in with the piles of books, so that B. doesn't notice; this certainly indicates that I don't feel justified in or good about what I'm doing! However, there is a bookstore near us which will "buy" used copies of books, and I'm seriously considering using the period of Lent as a time to sort of address the "addiction" by going through all these piles and unloading a good number of these books. It's not like this bookstore pays out a lot of money or anything, but these days every dollar helps, and I'm not a fan of keeping stuff around when it doesn't get used at all. Of course, the challenge here is to actually get into and out of this bookstore, cash-in-hand, without buying any more books!!!
So as the days pass and Ash Wednesday gets closer, I'm thinking more and more that I just might try "The Bible Feast". I'm not big on the food imagery, so I'll probably just think of it as the Bible Challenge. There are a few books I'll probably finish up before that, and then part of preparing for the Challenge is to decide what parts of the Bible I want to read, or what themes/topic areas I'd like to focus on while reading. I have to admit that a part of my brain actually breathes a small sigh of relief, knowing that a) some of these stacks of books might actually go away, and b) the choice of what to read - one specific book and only that book - has already been made for me. It feels like I'm giving my brain a bit of a rest.
J.
Wednesday, February 11, 2009
Wednesday, February 4, 2009
Memories
Today, I was going through some files looking for some paperwork I need to send in for S.'s summer camp application. Basically I needed documentation of her diagnosis, to re-qualify for our MRDD office, so that she's then eligible to be included in this camp.
I looked through the file where I keep the clinic notes from our visits with the genetic specialist, and where I recently also put the diagnosis documentation. Stapled to one of these sets of paper was the piece of paper I took notes on when I got the phone call from the genetics office that did the first bloodwork....and wow, the memories came flooding back. I remember sitting at the dining room table, writing "Prader-Willi Syndrome" on the paper, and then the word "yes" with an arrow to the name of the syndrome. The doctor told me a few other things, one being that we had to take S. back for further bloodwork to determine which version of PWS she has. B. was out of town for work, and I think S. was taking a nap...she was only 4 or 5 weeks old at this point. I hung up the phone and called Brad on his cell phone. They were on a break, so he was able to tell his boss right away what was going on, and she immediately arranged a flight home for him. I don't remember what B. and I said to each other in that phone call. At the time I didn't know anything about PWS - other than the reality we'd already been living, which was pretty frustrating and frightening. Our experience with our sweet S. to that point had been so unlike any prior experiences with K. when she was a baby, that honestly I wasn't sure S. was going to make it.
I don't necessarily like reliving those times, but at the same time it's somehow necessary to do that every now and then. Those days sucked. S. was a beautiful baby and the story of her arrival in our kitchen was/is certainly a good one....but we were so scared for her. Honestly I felt so guilty, somehow. The whole experience was so surreal, so unexpected, that it just felt like I had done something wrong, somehow. I mean, I knew that wasn't true - I don't smoke, drink, do drugs, or travel to foreign countries where I could have picked up some strange virus or whatever....but, at the time, I didn't know what to think. And even after we got the diagnosis, it's not like our mood lifted, because the prognosis for children w/PWS can be pretty hard to take in some respects. I can say now, 5 years down this road, that S. has done amazingly well, and she has not had to deal with some of the complications that are "the norm" for many children w/PWS. But, it could so easily have turned out differently, AND we have no idea what the future holds for her. Yes, she is probably "moderately high-functioning", but what does that mean, really? I don't know if that indicates college for her....a job? independent living at some point? I just don't know.
It's so hard to predict those things for a child who potentially, if left unsupervised, just might do serious harm to herself simply by eating too much food. Life in a college dorm, for example, does not encourage good eating habits!! Is she going to be frustrated, someday, by the possible fact that for her own good she really shouldn't live out on her own? She has such an interest in medical things - probably from being around doctors so much - but down the road, will she be angry that because of the learning limitations inherent in the PWS diagnosis, she might not realistically pursue that interest into a career? S. also loves babies, and loves to play "mom" and put her little baby doll into the little carrier, go off the store...I see her role-play like this, and of course the thought runs through my mind that someday I may have to tell her she is not able to have children of her own. Will she understand this, will it break her heart? Of course, maybe she will be able to go to college with no problem. Who knows, maybe by then there will be a drug that will quiet the hyperphagia enough that she would be able to concentrate well enough in a college setting. Maybe she will progress enough that caring for a child will be within her capabilities. Maybe she will be able to get married......so many unknowns. So stinkin' many.
J.
I looked through the file where I keep the clinic notes from our visits with the genetic specialist, and where I recently also put the diagnosis documentation. Stapled to one of these sets of paper was the piece of paper I took notes on when I got the phone call from the genetics office that did the first bloodwork....and wow, the memories came flooding back. I remember sitting at the dining room table, writing "Prader-Willi Syndrome" on the paper, and then the word "yes" with an arrow to the name of the syndrome. The doctor told me a few other things, one being that we had to take S. back for further bloodwork to determine which version of PWS she has. B. was out of town for work, and I think S. was taking a nap...she was only 4 or 5 weeks old at this point. I hung up the phone and called Brad on his cell phone. They were on a break, so he was able to tell his boss right away what was going on, and she immediately arranged a flight home for him. I don't remember what B. and I said to each other in that phone call. At the time I didn't know anything about PWS - other than the reality we'd already been living, which was pretty frustrating and frightening. Our experience with our sweet S. to that point had been so unlike any prior experiences with K. when she was a baby, that honestly I wasn't sure S. was going to make it.
I don't necessarily like reliving those times, but at the same time it's somehow necessary to do that every now and then. Those days sucked. S. was a beautiful baby and the story of her arrival in our kitchen was/is certainly a good one....but we were so scared for her. Honestly I felt so guilty, somehow. The whole experience was so surreal, so unexpected, that it just felt like I had done something wrong, somehow. I mean, I knew that wasn't true - I don't smoke, drink, do drugs, or travel to foreign countries where I could have picked up some strange virus or whatever....but, at the time, I didn't know what to think. And even after we got the diagnosis, it's not like our mood lifted, because the prognosis for children w/PWS can be pretty hard to take in some respects. I can say now, 5 years down this road, that S. has done amazingly well, and she has not had to deal with some of the complications that are "the norm" for many children w/PWS. But, it could so easily have turned out differently, AND we have no idea what the future holds for her. Yes, she is probably "moderately high-functioning", but what does that mean, really? I don't know if that indicates college for her....a job? independent living at some point? I just don't know.
It's so hard to predict those things for a child who potentially, if left unsupervised, just might do serious harm to herself simply by eating too much food. Life in a college dorm, for example, does not encourage good eating habits!! Is she going to be frustrated, someday, by the possible fact that for her own good she really shouldn't live out on her own? She has such an interest in medical things - probably from being around doctors so much - but down the road, will she be angry that because of the learning limitations inherent in the PWS diagnosis, she might not realistically pursue that interest into a career? S. also loves babies, and loves to play "mom" and put her little baby doll into the little carrier, go off the store...I see her role-play like this, and of course the thought runs through my mind that someday I may have to tell her she is not able to have children of her own. Will she understand this, will it break her heart? Of course, maybe she will be able to go to college with no problem. Who knows, maybe by then there will be a drug that will quiet the hyperphagia enough that she would be able to concentrate well enough in a college setting. Maybe she will progress enough that caring for a child will be within her capabilities. Maybe she will be able to get married......so many unknowns. So stinkin' many.
J.
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