Today B. was supposed to be at a retreat with the Vestry from our church. He decided to not go, letting the priest know via voice-mail that "his wife is sick and he needed to stay home with the kids."
Physically, I am fine (except for my left foot, which I injured 2 weeks ago and is still causing quite a bit of pain). Emotionally, and probably mentally, I am definitely not fine. I am not fine with feeling like a single parent for most of any given week. I am not fine with the fact that B. works/is gone for work about 65 hours every week, and then because of this church committee was gone at least 36 hours last weekend and would have been gone for a large portion of today. I am not fine with the fact that, in essence, I do a lot of single-parenting even though I am married, my husband is not deceased nor too ill to parent. He's just.....not here, and the amount of time that he's not here is much, much more than he is here. I've had enough of it. I don't do anything outside of childcare/housecare at the moment. Well, I am involved in the state chapter for Prader-Willi Syndrome....I'm sure most would say I'm very involved, what with being its President, attending at least 3 board meetings a year, and planning a large yearly fundraiser. But those responsibilities take me out of the house only a very minimal amount compared to amount of time B. is away from home/not responsible for what happens here, and I don't get a paycheck for any of the many, many responsibilities I have, whereas he does.
Now, don't come at me with the "Oh, but raising well-balanced, well-adjusted children in a happy, cozy home should be reward enough in itself. Who needs a paycheck? Your children will thank you down the road for providing them with such a happy childhood" nonsense. How many children really grow up and go back and thank their parents for anything? I had a good childhood too, but it didn't have much to do with any ooey-gooey sappiness provided by my parents. They provided food, shelter, lots of siblings, and as good an education as they could afford - for which I truly am thankful - and felt they did their job. All of which probably explains why parenting just doesn't bring me lots of fulfillment, sad to say. Probably, if I had known myself better 15 years ago, I would have gotten a master's degree, become a workaholic for 10 years, and maybe decided to have children around 38 years old. Marriage would have been in there somewhere, and the house - but kids would definitely have waited.
I do love my children. They are wonderful kids and I am fully aware that B. and I have been blessed immeasureably by having them in our lives. If I could go back in time I wouldn't change having them, I would just change the timing of when we decided to have children. The advice I will pass along to K. (because I'm not sure what lies down the road for S. in these areas) is to get all the education she wants before she even begins to think about having children. Go to school, get your master's degree, work for at least 5-8 years - and then get married. Wait two years, and then have children. At least in that scenario, presumably both she and her spouse will have incomes such that reliable daycare can be paid for, if she continues working (because, of course, in our society there is never any doubt that the man would continue working!!!!!).
So anyway....do I feel bad that B. skipped this meeting today in order to stay home? Well, yes and no. He's the kind of person who fulfills these kinds of obligations and I know he probably did not feel 100% positive about skipping it. On the other hand, I never signed up to do this alone. We never sat down, when we got married, and talked about issues like this, i.e. how much outside activities are okay given the work schedule one/both of us might have. Or, which one is primarily responsible for childcare - husband or wife - and who is more of just a helper. I never, ever said that I was perfectly fine being the one who stayed home all the time with the kids; the only reason it has worked out this way is a) B. happens to have the job which brings in the money, and b) I did not get any kind of career going before K. came along, so obviously my job was the one that fell away when our two schedules didn't jive anymore. I am not happy being home all the time. I can't tell you how many times I and the kids have been in the car going somewhere, and I've thought to myself, if I didn't have kids there is no way I'd be going anywhere at all, let alone to wherever we were going at the time!!! We've trekked to activities countless times (especially lately) in bad weather, because the activity wasn't cancelled and we'd paid already, and I would have that thought. There just isn't any balance of responsibility in the parenting area between B. and I. And it's not that he avoids it, or thinks it isn't his responsibility! He's not one of those chauvinist guys who thinks "that's not my job" when it comes to childcare. He changed diapers just like I did, and when we get into conversations about this he usually, eventually says "I'd trade places with you in a heartbeat". Which is obviously not going to happen, since there's no way I could just go out and get a job that pays me what he currently makes. Plus, I'm not sure he'd truly enjoy being home all the time.
Well, my fingers are freezing and I've typed enough for now.
J.
Saturday, January 31, 2009
Thursday, January 29, 2009
Guess not; and, the SAHM life; and, the Bible challenge!
I guess that "30 posts in 30 days" thing wasn't for me. Sometimes I think about blogging and when I get up here, can't remember any of the things I wanted to write about. Plus, it has been so stinkin' cold lately that all I want to do after the girls go to bed is curl up under about 10 blankets and read. Honestly, I've taken to wearing a hat around the house! And it's cold up here by the computer, too.
Yesterday was a long, long day. School was called off here, and so S. and K. were home all day. S. had a general doctor's appointment scheduled, and I'm glad because otherwise I think we'd all have been nuts by the end of the day. I wasn't in the best mood as it was. K. was feeling the winter blah's as well. She said "I just wish something would happen!!". I said I did too! I so much wish there were some indoor gym or something here; sort of like the play areas at the fast-food places, only bigger and minus the food. Somewhere the kids could go and run around, play, climb, get some exercise. There just isn't anywhere to go on snow days; playing outside is only fun for so long, especially when it's as cold as it's been here.
My mood has been pretty dismal anyway, for a long time. I just really dislike feeling "trapped" here at home. My kids are great kids, they aren't troublemakers, they get along relatively well....so in those areas I don't have anything to complain about. But I just hate being here all the time. I know some women out there might look at my circumstances and say, "But you've got it good! You get to not work, and stay home with your kids!", which is a good thing, yes, I agree. BUT.....I just kind of feel like there is a whole other part of me, a large array of skills and talents and brain cells, that are definitely NOT being utilized by being a SAHM. A question arises often in my thoughts, when I am at my wits' end here at home, why would God bless me with intelligence and a facility for working with the public, and here I am in this situation? I know this time is temporary; for financial reasons (as in, we're broke!) I will be going back to work probably in the fall. I also know that, when I am working again, I may have to trust the care of my kids to someone else besides Brad for short periods of time.....and that will be difficult! There is a certain amount of mental comfort in being able to be home for one's children, and know firsthand that they are alright. I don't plan on finding full-time work, but no matter where I end up working, inevitably we will need a third party to watch S. and K. at some point in the week.
From a faith standpoint, I might venture to say that maybe this period of not being a working mom was God's way of forcing me to focus more on my family, on our home. Certainly I have at least attempted over the past 13 months to take a hard look at our house and try to get rid of stuff. I know I have been able to pay more attention to our money situation. Perhaps in the long run I will see this all as an "enforced period of stillness", or something. Sigh.
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A couple from our church has put out a reading challenge for Lent, called something like "The Bible Feast" - the challenge is to read only the Bible for the entire period of Lent. No newspapers, no magazines, no books (gasp!!!) other than the Bible. I am considering taking the challenge. I always have plans to read the Bible - the whole thing, not just parts - but of course I have LOTS of distracting piles of other books laying around. However, Lent is only 40 days; I really would like to read the whole Bible; I'm wondering if, by doing this, God might be able to answer some of my "life dilemmas" (see above!); and.....I think my soul needs this! I read so many blogs written by Christian women, and these are women who truly do spend quality time almost every day praying, reading the Bible, reading devotional books. Just reading their blogs and witnessing how they keep their faith in God even through extreme trials has enriched my own faith life. Maybe spending time every day reading the Bible is a more direct route to the same outcome! Perhaps that is the reason why I've been led to reading these blogs all these months. And you know, the freaky thing is, it was the woman in the same couple who are proposing "The Bible Feast" who pointed me to the first blog I ever read, which in turn led me to other Christian blogs......hmmmm. Coincidence, or God at work?
J.
Yesterday was a long, long day. School was called off here, and so S. and K. were home all day. S. had a general doctor's appointment scheduled, and I'm glad because otherwise I think we'd all have been nuts by the end of the day. I wasn't in the best mood as it was. K. was feeling the winter blah's as well. She said "I just wish something would happen!!". I said I did too! I so much wish there were some indoor gym or something here; sort of like the play areas at the fast-food places, only bigger and minus the food. Somewhere the kids could go and run around, play, climb, get some exercise. There just isn't anywhere to go on snow days; playing outside is only fun for so long, especially when it's as cold as it's been here.
My mood has been pretty dismal anyway, for a long time. I just really dislike feeling "trapped" here at home. My kids are great kids, they aren't troublemakers, they get along relatively well....so in those areas I don't have anything to complain about. But I just hate being here all the time. I know some women out there might look at my circumstances and say, "But you've got it good! You get to not work, and stay home with your kids!", which is a good thing, yes, I agree. BUT.....I just kind of feel like there is a whole other part of me, a large array of skills and talents and brain cells, that are definitely NOT being utilized by being a SAHM. A question arises often in my thoughts, when I am at my wits' end here at home, why would God bless me with intelligence and a facility for working with the public, and here I am in this situation? I know this time is temporary; for financial reasons (as in, we're broke!) I will be going back to work probably in the fall. I also know that, when I am working again, I may have to trust the care of my kids to someone else besides Brad for short periods of time.....and that will be difficult! There is a certain amount of mental comfort in being able to be home for one's children, and know firsthand that they are alright. I don't plan on finding full-time work, but no matter where I end up working, inevitably we will need a third party to watch S. and K. at some point in the week.
From a faith standpoint, I might venture to say that maybe this period of not being a working mom was God's way of forcing me to focus more on my family, on our home. Certainly I have at least attempted over the past 13 months to take a hard look at our house and try to get rid of stuff. I know I have been able to pay more attention to our money situation. Perhaps in the long run I will see this all as an "enforced period of stillness", or something. Sigh.
********************************************************************************
A couple from our church has put out a reading challenge for Lent, called something like "The Bible Feast" - the challenge is to read only the Bible for the entire period of Lent. No newspapers, no magazines, no books (gasp!!!) other than the Bible. I am considering taking the challenge. I always have plans to read the Bible - the whole thing, not just parts - but of course I have LOTS of distracting piles of other books laying around. However, Lent is only 40 days; I really would like to read the whole Bible; I'm wondering if, by doing this, God might be able to answer some of my "life dilemmas" (see above!); and.....I think my soul needs this! I read so many blogs written by Christian women, and these are women who truly do spend quality time almost every day praying, reading the Bible, reading devotional books. Just reading their blogs and witnessing how they keep their faith in God even through extreme trials has enriched my own faith life. Maybe spending time every day reading the Bible is a more direct route to the same outcome! Perhaps that is the reason why I've been led to reading these blogs all these months. And you know, the freaky thing is, it was the woman in the same couple who are proposing "The Bible Feast" who pointed me to the first blog I ever read, which in turn led me to other Christian blogs......hmmmm. Coincidence, or God at work?
J.
Friday, January 23, 2009
Post #3: Short and sweet...
because tomorrow is gathering #3 on behalf of S.'s birthday, and I'm still cleaning the house.
On a church street sign today I read this: "Survivor: Suburbia Style". Ain't that the truth? Not so much here, in my little town - people here are relatively down-to-earth and likable, I have found. So when I read this sign, what jumped to mind was more of a "financially surviving middle-class-life" kind of vibe. B. makes twice as much as my dad ever did when I was growing up, and he and I have 8 fewer children than my parents did....and we still have no stinkin' money. We have health insurance and still can't cover the costs not covered by the insurance. We eat generic everything. I dilute the generic fabric softener when I wash clothes. Let me say, one thing to be learned when money is tight is how to make do with less - how it's not actually necessary or better to buy the brand-name stuff. After our "reckoning" with the financial guy two weeks ago, things may get just sliiiiiiiightly better in a few months.....but we're still using retirement money to pay off credit card bills, and while it will be a relief to have some breathing room, achieving that in this way does not give me warm-fuzzies.
************************************************************************************
On a brighter note, my floors are clean, which is nice because they really needed it. It's not nice to step on the same sticky spot several weeks in a row.
J.
On a church street sign today I read this: "Survivor: Suburbia Style". Ain't that the truth? Not so much here, in my little town - people here are relatively down-to-earth and likable, I have found. So when I read this sign, what jumped to mind was more of a "financially surviving middle-class-life" kind of vibe. B. makes twice as much as my dad ever did when I was growing up, and he and I have 8 fewer children than my parents did....and we still have no stinkin' money. We have health insurance and still can't cover the costs not covered by the insurance. We eat generic everything. I dilute the generic fabric softener when I wash clothes. Let me say, one thing to be learned when money is tight is how to make do with less - how it's not actually necessary or better to buy the brand-name stuff. After our "reckoning" with the financial guy two weeks ago, things may get just sliiiiiiiightly better in a few months.....but we're still using retirement money to pay off credit card bills, and while it will be a relief to have some breathing room, achieving that in this way does not give me warm-fuzzies.
************************************************************************************
On a brighter note, my floors are clean, which is nice because they really needed it. It's not nice to step on the same sticky spot several weeks in a row.
J.
Thursday, January 22, 2009
Post #3: Nine things I wonder about
1. Why would anyone ever want to drive 25 mph in a 35 mph zone? Do they do this just to totally irritate the person behind them? I've repeatedly instructed B. to smack me if I ever do this. I have also warned him that I will return the favor.
2. Why have clothing companies started putting those garment-care tags on the side seams of shirts?? They are 100 times more likely to irritate the skin there (esp. the skin of a 5-yr-old) than they ever did when placed on the neckline.
3. Why is the volume on a commercial about 50 times louder than on the show you are watching?
4. Why does Billie Mays practically SCREAM his commercials? You know this guy, he sells Oxi-clean, and this new sandwhich maker contraption...I'd be much more likely to buy his products if he didn't shout like an idiot.
5. Why do people go to libraries and only take out stacks of DVDs?
6. Does anyone still think the "Beetle Bailey" cartoon is funny?
7. How does a nine-year-old get to be so paranoid about peanut butter? Yesterday she asked me if chocolate-chip cookies had peanut-butter in them. Today she asked if her chicken sandwhich had peanut-butter in it....okay, at that point I knew she was just being funny, but geez...
8. Why do some streets in my neighborhood get their mail by 10 a.m., and we don't get ours until 4:30??
9. Why do people audition on "American Idol" when they very clearly don't have even one iota of singing talent? Do they not watch the show, ever? Why would they subject themselves to that kind of embarassment on national television? I feel bad for some of the people that go on there, and I often wonder what they deal with when they go home as far as their friends' and family members' reaction to their "15 minutes of fame".
Just wonderin',
J.
2. Why have clothing companies started putting those garment-care tags on the side seams of shirts?? They are 100 times more likely to irritate the skin there (esp. the skin of a 5-yr-old) than they ever did when placed on the neckline.
3. Why is the volume on a commercial about 50 times louder than on the show you are watching?
4. Why does Billie Mays practically SCREAM his commercials? You know this guy, he sells Oxi-clean, and this new sandwhich maker contraption...I'd be much more likely to buy his products if he didn't shout like an idiot.
5. Why do people go to libraries and only take out stacks of DVDs?
6. Does anyone still think the "Beetle Bailey" cartoon is funny?
7. How does a nine-year-old get to be so paranoid about peanut butter? Yesterday she asked me if chocolate-chip cookies had peanut-butter in them. Today she asked if her chicken sandwhich had peanut-butter in it....okay, at that point I knew she was just being funny, but geez...
8. Why do some streets in my neighborhood get their mail by 10 a.m., and we don't get ours until 4:30??
9. Why do people audition on "American Idol" when they very clearly don't have even one iota of singing talent? Do they not watch the show, ever? Why would they subject themselves to that kind of embarassment on national television? I feel bad for some of the people that go on there, and I often wonder what they deal with when they go home as far as their friends' and family members' reaction to their "15 minutes of fame".
Just wonderin',
J.
Wednesday, January 21, 2009
Post #2: That PWS Thing, Part 2
Hi everyone. This post-a-day thing is somewhat fun....although I have to admit I have other projects tempting me away from the computer! But, onward. I have never sat down and actually documented the first days of our experiences after S. was born, so this is a good thing!
I can't believe she is 5 years old now. Those first 6 months were so freakin' difficult, to look towards the future during those days was more than our minds could bear for any length of time. Parents who were further down the PWS road with their kids told us, repeatedly, that things would get better, but at the time that seemed hard to believe. When we were able to bring her home from the hospital I remember thinking "well, now everything will be fine, she'll just have us giving her bottles instead of a different nurse every time, the issues will just resolve themselves." We didn't have a diagnosis at that point, and although the neonatologist referred us to a geneticist for further testing, I put it off for a week or two....not sure why. Probably a bit of denial going on. I know at one point I said to B. that I wasn't sure S. was going to make it; she was just so sleepy, so floppy, and seemed to have little/no desire to eat - all very unlike the average newborn. Making sure she ate enough was incredibly challenging. A large percentage of babies with PWS leave the hospital(NICU) with some kind of feeding tube, but S. did not. We ended up feeding her first from a bottle (on which the nipple was a fast-flow version, and we even squeezed the bottle itself just slightly), and then when she ran out of energy we used a medicine dropper or a spoon. Doing this every three hours for several months....exhausting, frustrating.
When we finally did take S. to the genetic specialist, Prader-Willi Syndrome was mentioned as she evaluated S., and neither of us had ever heard of it. The doctor didn't say that S. had PWS for sure - of course tests needed to be run - but that S. seemed to show signs of this. Once we got home, I of course looked up the syndrome on the internet, and initially did not find anything. B. went out of town for work, and while he was gone the doctor called back with a positive diagnosis for PWS. B. immediately hopped on a plane and flew home. And thus the journey began.
The news was a shock to us, and also to our extended families. How could we explain this adequately to them, when we had never heard of PWS ourselves? What do we tell all the friends and neighbors? PWS is such a complex syndrome...there are so many things could happen, that might happen, in the course of S.'s life with PWS. But on the other hand, not all children with PWS experience all of those things. We didn't know this then! This was something we learned as time went by. S. did begin to "wake up", she did start to pay attention to her environment, she did start to smile at us and eventually even did that "belly giggle" that is so absolutely adorable. We slowly learned how best to help her and what therapies etc. would benefit her the most. She started growth-hormone therapy at 10 months, and we are glad we decided to do this for her.
These days, S. is a stubborn, happy, smart girl who loves to have fun, loves going to preschool, loves her big sister and her parents. She loves people in general! Basically she is doing 100% better than we ever, ever expected when we first began to educate ourselves about PWS. S. will even be going, most likely, to full-day kindergarten in the fall, which just boggles my mind a bit. Granted, she definitely still exhibits her fair share of PWS characteristics; that is just a fact of our lives. But we are able to live a fairly normal family life, albeit with a great deal more attention paid to what we eat and when we eat it. (Yes, I do confess to eating a bit more junkfood, late at night after S. is in bed, than is good for me...sigh. :-) )
Well, I guess that's the post for today. There's a lot more I could say about the syndrome and how it has affected all of us, but I'll save that for another day!
On a weather-related note, I am tired of being cold!!!!!!
J.
I can't believe she is 5 years old now. Those first 6 months were so freakin' difficult, to look towards the future during those days was more than our minds could bear for any length of time. Parents who were further down the PWS road with their kids told us, repeatedly, that things would get better, but at the time that seemed hard to believe. When we were able to bring her home from the hospital I remember thinking "well, now everything will be fine, she'll just have us giving her bottles instead of a different nurse every time, the issues will just resolve themselves." We didn't have a diagnosis at that point, and although the neonatologist referred us to a geneticist for further testing, I put it off for a week or two....not sure why. Probably a bit of denial going on. I know at one point I said to B. that I wasn't sure S. was going to make it; she was just so sleepy, so floppy, and seemed to have little/no desire to eat - all very unlike the average newborn. Making sure she ate enough was incredibly challenging. A large percentage of babies with PWS leave the hospital(NICU) with some kind of feeding tube, but S. did not. We ended up feeding her first from a bottle (on which the nipple was a fast-flow version, and we even squeezed the bottle itself just slightly), and then when she ran out of energy we used a medicine dropper or a spoon. Doing this every three hours for several months....exhausting, frustrating.
When we finally did take S. to the genetic specialist, Prader-Willi Syndrome was mentioned as she evaluated S., and neither of us had ever heard of it. The doctor didn't say that S. had PWS for sure - of course tests needed to be run - but that S. seemed to show signs of this. Once we got home, I of course looked up the syndrome on the internet, and initially did not find anything. B. went out of town for work, and while he was gone the doctor called back with a positive diagnosis for PWS. B. immediately hopped on a plane and flew home. And thus the journey began.
The news was a shock to us, and also to our extended families. How could we explain this adequately to them, when we had never heard of PWS ourselves? What do we tell all the friends and neighbors? PWS is such a complex syndrome...there are so many things could happen, that might happen, in the course of S.'s life with PWS. But on the other hand, not all children with PWS experience all of those things. We didn't know this then! This was something we learned as time went by. S. did begin to "wake up", she did start to pay attention to her environment, she did start to smile at us and eventually even did that "belly giggle" that is so absolutely adorable. We slowly learned how best to help her and what therapies etc. would benefit her the most. She started growth-hormone therapy at 10 months, and we are glad we decided to do this for her.
These days, S. is a stubborn, happy, smart girl who loves to have fun, loves going to preschool, loves her big sister and her parents. She loves people in general! Basically she is doing 100% better than we ever, ever expected when we first began to educate ourselves about PWS. S. will even be going, most likely, to full-day kindergarten in the fall, which just boggles my mind a bit. Granted, she definitely still exhibits her fair share of PWS characteristics; that is just a fact of our lives. But we are able to live a fairly normal family life, albeit with a great deal more attention paid to what we eat and when we eat it. (Yes, I do confess to eating a bit more junkfood, late at night after S. is in bed, than is good for me...sigh. :-) )
Well, I guess that's the post for today. There's a lot more I could say about the syndrome and how it has affected all of us, but I'll save that for another day!
On a weather-related note, I am tired of being cold!!!!!!
J.
Tuesday, January 20, 2009
Post #1: That PWS Thing
So in the process of "blog-lurking" last night, I came upon an idea another blogger had to attempt doing 30 posts in 30 days. I'm not sure she was successful, but it seems like a good way to get into a habit of actually writing about all the potential-blog-topic ideas I have throughout the day. This will be, therefore....
Post #1, with the 30th post being done on February 20....if, of course, I manage to do this!
"That PWS Thing"
Five years ago today, our younger daughter was born in our kitchen! No, I'm not kidding, and that statement would be less interesting if we had actually planned for it to be a home-birth situation. However, we had no desire for a home-birth, and yet apparently S. had been working on being born all day, and for whatever reason I was not notified of her intentions (other than some very, very mild back twinges) until standing in our kitchen, coat and shoes on, telling B. "it's time". Then the water broke and I could tell we weren't even going to make it out to the car, so I then tell B. to "call 9-1-1". He asks if I'm sure, and well, some things you just know! The EMTs arrived with about 3 minutes to spare before S. made her appearance, and she and I both took a ride to the hospital in the ambulance. I remember when I was pushed into the ER area there seemed to be quite a crowd of medical staff waiting; not sure if the EMTs had radio'd ahead that S. was having problems, or they just wanted a glimpse of the woman who had had an emergency birth situation in her kitchen! Our older daughter slept through the whole thing even though her room isn't too far from the kitchen. B. was a real trooper; I'm not sure how he managed to keep from passing out through all of this!
For me, of course, this is all a little blurry. Everything that happened in the next days, weeks and months after S.'s birth was so difficult, such a shock, that the "wow" factor of her exciting arrival gets shoved to the back. I remember the EMT who "caught" her was holding her and basically watching her before we left for the hospital - I think he was either waiting for her to breathe, or making sure she continued to breathe. I know she spent about 10-12 hours in the regular nursery, and then early the next day she was transferred to the NICU. This was a complete shock to both of us. There had been no indication during the pregnancy that anything might be wrong with S., so we were completely unprepared for what the next 11 days would be like for us. The nursery staff found S. to be extremely hypotonic (nonexistent muscle tone), and she had extreme difficulty in bottle-feeding as she could not coordinate the suck-swallow-breathe rhythm which is instinctual in infants.
Before she was transferred to the NICU, I went down to the nursery to see her; she was in an isolette and was very still. I know I asked the nurse about the isolette. S. was transferred soon after, and the first time I saw her in the NICU environment, hooked up to various monitors, I just cried and cried. That moment was like going from a nice warm bath (i.e. a supposedly uneventful, completely regular pregnancy) to being plunged into the icy waters of the North Atlantic in January. Total and complete shock. She was a gorgeous baby, of course! And yet, when I would lean against the isolette and look down at her, I just sobbed and said "I'm sorry, I'm sorry". We spent the next 11 days, after I was discharged (incredibly painful and surreal to leave the hospital without the baby), travelling back and forth to the NICU, spending as much time with her as we could, consistently attempting to feed her via bottle and watching her oxygen sats drop every time. I cried so much in those two weeks.
B. and I were both in shock, I think. If we had had any idea, prior to S.'s birth, that something was wrong I think we would have handled it all so much better. But we had absolutely no idea. S.'s version of Prader-Willi Syndrome isn't genetic, so we had no history of the syndrome on either side of the family as a warning. My pregnancy with her was ordinary, and although fetal movements often stop completely with babies with PWS, S. always moved occasionally throughout the day, so I didn't have that to alert me. Granted she seemed to
arrive rather quickly, possibly owing to the lack of muscle tone, but at the time that certainly didn't make any red flags go up, for us or for any medical staff. Of course as a full-term baby in the NICU she was practically the largest baby there, and in the course of sitting with her, I gathered that there were a dozen infants who had been there for weeks, some of them months. The bill for S.'s 11 days there was huge; my heart goes out to those families whose sweet babies are there for weeks and months!
Well, this is turning out to be a multiple-post topic! To be continued....
J.
Post #1, with the 30th post being done on February 20....if, of course, I manage to do this!
"That PWS Thing"
Five years ago today, our younger daughter was born in our kitchen! No, I'm not kidding, and that statement would be less interesting if we had actually planned for it to be a home-birth situation. However, we had no desire for a home-birth, and yet apparently S. had been working on being born all day, and for whatever reason I was not notified of her intentions (other than some very, very mild back twinges) until standing in our kitchen, coat and shoes on, telling B. "it's time". Then the water broke and I could tell we weren't even going to make it out to the car, so I then tell B. to "call 9-1-1". He asks if I'm sure, and well, some things you just know! The EMTs arrived with about 3 minutes to spare before S. made her appearance, and she and I both took a ride to the hospital in the ambulance. I remember when I was pushed into the ER area there seemed to be quite a crowd of medical staff waiting; not sure if the EMTs had radio'd ahead that S. was having problems, or they just wanted a glimpse of the woman who had had an emergency birth situation in her kitchen! Our older daughter slept through the whole thing even though her room isn't too far from the kitchen. B. was a real trooper; I'm not sure how he managed to keep from passing out through all of this!
For me, of course, this is all a little blurry. Everything that happened in the next days, weeks and months after S.'s birth was so difficult, such a shock, that the "wow" factor of her exciting arrival gets shoved to the back. I remember the EMT who "caught" her was holding her and basically watching her before we left for the hospital - I think he was either waiting for her to breathe, or making sure she continued to breathe. I know she spent about 10-12 hours in the regular nursery, and then early the next day she was transferred to the NICU. This was a complete shock to both of us. There had been no indication during the pregnancy that anything might be wrong with S., so we were completely unprepared for what the next 11 days would be like for us. The nursery staff found S. to be extremely hypotonic (nonexistent muscle tone), and she had extreme difficulty in bottle-feeding as she could not coordinate the suck-swallow-breathe rhythm which is instinctual in infants.
Before she was transferred to the NICU, I went down to the nursery to see her; she was in an isolette and was very still. I know I asked the nurse about the isolette. S. was transferred soon after, and the first time I saw her in the NICU environment, hooked up to various monitors, I just cried and cried. That moment was like going from a nice warm bath (i.e. a supposedly uneventful, completely regular pregnancy) to being plunged into the icy waters of the North Atlantic in January. Total and complete shock. She was a gorgeous baby, of course! And yet, when I would lean against the isolette and look down at her, I just sobbed and said "I'm sorry, I'm sorry". We spent the next 11 days, after I was discharged (incredibly painful and surreal to leave the hospital without the baby), travelling back and forth to the NICU, spending as much time with her as we could, consistently attempting to feed her via bottle and watching her oxygen sats drop every time. I cried so much in those two weeks.
B. and I were both in shock, I think. If we had had any idea, prior to S.'s birth, that something was wrong I think we would have handled it all so much better. But we had absolutely no idea. S.'s version of Prader-Willi Syndrome isn't genetic, so we had no history of the syndrome on either side of the family as a warning. My pregnancy with her was ordinary, and although fetal movements often stop completely with babies with PWS, S. always moved occasionally throughout the day, so I didn't have that to alert me. Granted she seemed to
arrive rather quickly, possibly owing to the lack of muscle tone, but at the time that certainly didn't make any red flags go up, for us or for any medical staff. Of course as a full-term baby in the NICU she was practically the largest baby there, and in the course of sitting with her, I gathered that there were a dozen infants who had been there for weeks, some of them months. The bill for S.'s 11 days there was huge; my heart goes out to those families whose sweet babies are there for weeks and months!
Well, this is turning out to be a multiple-post topic! To be continued....
J.
Wednesday, January 7, 2009
The reckoning
Tomorrow B. and I are going to "our" financial guy, so as to best decide what parts of our burgeoning debt we'll be using B.'s retirement money to pay off.
Yep, you read that correctly...."retirement" money. You know, the money put away in that 401K, every paycheck, that is supposed to be saved until you actually retire? Well, not so for us, at least not with this money. I remember my own parents having to cash out their retirement money accounts...several times. I was too young to really understand all of the discussions, but I do remember the term "IRA account" mentioned. Little did I think that we would be in the same position. But, obviously, we have been living well beyond our means for a very, very long time, and now we are due for a reckoning. One thing that is going to make us say "ouch" repeatedly tomorrow, is the fact that while we are incredibly thankful to have this money to use, because we are cashing out a retirement account we will, of course, have to pay a penalty on it, plus taxes....so we aren't going to be able to erase all the debts which are causing us problems. This bites, but I am hoping, and praying, that God gives us the wisdom to use this money in a way that will improve our future and help us be good stewards of the financial blessings we do have!
We are not about to foreclose or anything, but honestly, we have credit card and medical bills which we are just having a lot of trouble paying. We are trying everything we can think of to cut living costs....we've turned down the heat, we're going to try and cut our cell phone bills somehow (I know we could just get rid of one/both of them, but as I'm driving a van with 118,000 miles on it, I sort of need the phone as a safety precaution!), we've cancelled the newspaper, we don't get any magazines. We almost never eat out anymore, which is actually fine with me; our children behave pretty well in restaurants, but K. doesn't really enjoy going out to eat, and S. doesn't need the extra calories. Sometimes eating out really isn't all that much fun, and honestly sometimes, the food isn't always that good!
Anyway, hopefully we will be able to solve some of our problems tomorrow, and get on top of these issues so that they don't happen ever again!!
J.
Yep, you read that correctly...."retirement" money. You know, the money put away in that 401K, every paycheck, that is supposed to be saved until you actually retire? Well, not so for us, at least not with this money. I remember my own parents having to cash out their retirement money accounts...several times. I was too young to really understand all of the discussions, but I do remember the term "IRA account" mentioned. Little did I think that we would be in the same position. But, obviously, we have been living well beyond our means for a very, very long time, and now we are due for a reckoning. One thing that is going to make us say "ouch" repeatedly tomorrow, is the fact that while we are incredibly thankful to have this money to use, because we are cashing out a retirement account we will, of course, have to pay a penalty on it, plus taxes....so we aren't going to be able to erase all the debts which are causing us problems. This bites, but I am hoping, and praying, that God gives us the wisdom to use this money in a way that will improve our future and help us be good stewards of the financial blessings we do have!
We are not about to foreclose or anything, but honestly, we have credit card and medical bills which we are just having a lot of trouble paying. We are trying everything we can think of to cut living costs....we've turned down the heat, we're going to try and cut our cell phone bills somehow (I know we could just get rid of one/both of them, but as I'm driving a van with 118,000 miles on it, I sort of need the phone as a safety precaution!), we've cancelled the newspaper, we don't get any magazines. We almost never eat out anymore, which is actually fine with me; our children behave pretty well in restaurants, but K. doesn't really enjoy going out to eat, and S. doesn't need the extra calories. Sometimes eating out really isn't all that much fun, and honestly sometimes, the food isn't always that good!
Anyway, hopefully we will be able to solve some of our problems tomorrow, and get on top of these issues so that they don't happen ever again!!
J.
A great poem found on another blog
I found this poem on another blog I was reading yesterday. Unfortunately, since I surf so many blogs sometimes, I now forget where exactly I found this. The first line caught my attention, since my mother weaves and we both (along with several of my sisters) love hand-crafting with yarn/fabric/thread...the imagery in this piece really helps me grasp a bit better what God is doing with my life.
The Weaving
My life is but a weaving between my Lord and me,
I may not see the pattern, but He knows what it should be;
Most times I do not understand and in my foolish pride,
Forget God sees the upper, while I the underside.
Sometimes He weaveth sorrows which seemeth strange to me,
But I'll just trust His judgment and work on faithfully;
'Tis He who fills the shuttle, He knows just what is best,
So I'll just weave in earnest and leave Him with the rest.
At last when life is ended and I with Him abide,
Then I shall see the pattern upon the upper side;
And I shall know the reason why joy with pain entwined,
Was woven in the fabric of life that God designed.
The dark threads are as needful in the Creator's skillful hand,
As the threads of gold and silver in the pattern He has planned.
But not 'til the loom is silent and the shuttles cease to fly,
Shall God unroll the fabric and show the reason why.
--Author unknown
J.
The Weaving
My life is but a weaving between my Lord and me,
I may not see the pattern, but He knows what it should be;
Most times I do not understand and in my foolish pride,
Forget God sees the upper, while I the underside.
Sometimes He weaveth sorrows which seemeth strange to me,
But I'll just trust His judgment and work on faithfully;
'Tis He who fills the shuttle, He knows just what is best,
So I'll just weave in earnest and leave Him with the rest.
At last when life is ended and I with Him abide,
Then I shall see the pattern upon the upper side;
And I shall know the reason why joy with pain entwined,
Was woven in the fabric of life that God designed.
The dark threads are as needful in the Creator's skillful hand,
As the threads of gold and silver in the pattern He has planned.
But not 'til the loom is silent and the shuttles cease to fly,
Shall God unroll the fabric and show the reason why.
--Author unknown
J.
Sunday, January 4, 2009
The lyrics...
for the song "Say", by John Mayer:
"Take all of your wasted honor
every little past frustration
Take all of your so called problems
better put 'em in quotations
Say what you need to say (x7),
Say what you need to saaaay
Walking like a one man army
Fighting with the shadows in your head
Living out the same old moment
Knowing you'd be better off instead
If you could only
Say what you need to say (x7),
Say what you need to say
Have no fear, for giving in
Have no fear, for giving over
You better know that in the end
It's better to say too much
Than never to say what you need to say again
Even if your hands are shaking
And your faith is broken
Even as the eyes are closing
Do it with a heart wide open...
Say what you need to say (x7)
Say what you need to, say what you need to,
say what you need to saaaay....."
I've heard this song many times on the radio. I'm not a huge fan of John Mayer the person, but I do like this particular song. It has a very direct message, which states that it's better to get out those feelings in your head and heart than to keep them in, where they do no-one any good.
So, why the phrase "Say what you need to say" as a title for this blog? Well, I guess because I see blogging as an outlet for at least some of what I want to say. I'm an intelligent person who is currently in need of both a writing outlet and a way to write about various aspects of my life. I'll be writing about various things, including books, and random stuff, and marriage, and parenting, and life as a parent of a special-needs-child, and life with a child with Prader-Willi Syndrome and all the challenges that brings to me and my family. I could write a whole blog on PWS all by itself...but that's not all of who I am, and while PWS definitely affects my family it does not completely define my family. I may mention God/Jesus and my faith life at times, but please, I'm not trying to evangelize anyone or shove religion at you! I may be learning a bit about myself in this process, but that's to be expected, and I hope you'll bear with me -- like this blog, we are all a work-in-progress!
J.
"Take all of your wasted honor
every little past frustration
Take all of your so called problems
better put 'em in quotations
Say what you need to say (x7),
Say what you need to saaaay
Walking like a one man army
Fighting with the shadows in your head
Living out the same old moment
Knowing you'd be better off instead
If you could only
Say what you need to say (x7),
Say what you need to say
Have no fear, for giving in
Have no fear, for giving over
You better know that in the end
It's better to say too much
Than never to say what you need to say again
Even if your hands are shaking
And your faith is broken
Even as the eyes are closing
Do it with a heart wide open...
Say what you need to say (x7)
Say what you need to, say what you need to,
say what you need to saaaay....."
I've heard this song many times on the radio. I'm not a huge fan of John Mayer the person, but I do like this particular song. It has a very direct message, which states that it's better to get out those feelings in your head and heart than to keep them in, where they do no-one any good.
So, why the phrase "Say what you need to say" as a title for this blog? Well, I guess because I see blogging as an outlet for at least some of what I want to say. I'm an intelligent person who is currently in need of both a writing outlet and a way to write about various aspects of my life. I'll be writing about various things, including books, and random stuff, and marriage, and parenting, and life as a parent of a special-needs-child, and life with a child with Prader-Willi Syndrome and all the challenges that brings to me and my family. I could write a whole blog on PWS all by itself...but that's not all of who I am, and while PWS definitely affects my family it does not completely define my family. I may mention God/Jesus and my faith life at times, but please, I'm not trying to evangelize anyone or shove religion at you! I may be learning a bit about myself in this process, but that's to be expected, and I hope you'll bear with me -- like this blog, we are all a work-in-progress!
J.
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