Thursday, December 30, 2010

Just for fun
K and S got these toys for Christmas.  Some of the more amusing toys they've gotten for presents.  Not annoying, which can't always be said for noise-making toys.

Urg, losing weight - it's not simple

I had a doctor's appointment recently, which ended with the lecture many of us probably hear from our doctors on a fairly regular basis.  You know, the "you really need to start exercising regularly" lecture.  In my case, my doctor is also able to throw in the "you want to live a long life for your kids, they need you to be healthy" aspect of this particular lecture.

I like this particular doctor.  I've been seeing her for over a decade, and even though I only see her once a year, there is some level of "meeting of the minds" with her.  Also, as a doctor she is only doing what she is logically supposed to do, and she does it not only because of that but also because I sense she does genuinely care about the overall health of her patients.  So I took all of that into account that day.


But I still left the office building feeling pretty cra**y.  I'm tired of this lecture.  The issues/concepts/processes of losing weight and taking better care of myself are so convoluted and complex!  I know they probably are for everyone out there.  In addition, no matter how much my doctor might care about the overall health of her patients, she still only sees me one time a year, which means she doesn't know anything about ME, my daily life, the emotional/mental tangles which make up my daily existence.  I could probably grab only one detail out of her entire monologue (and it was that - there was no conversation about the state of my life) that might be doable in my current circumstances.  And I truly did not need her to comment that I especially needed to take care of myself because I have a special-needs child who will need me for a long time to come, because I can take care of her better than anyone else......REALLY???  No kidding.  Wow, I have never thought about that, doctor.  No, I don't lay awake at night, or have momentary episodes of blind panic some days, gripped with wrenching fear about who would take care of K and S should something happen to my husband or me.  Thanks for that reminder, doctor, especially coming from you, who has NO concept of what special-needs-parenting is like and whose children are grown and who, as a doctor, probably had a nanny raising her children for most of their young lives anyway.  Thanks for that. 

I think that physicians in general, in their effort to look after the general health of their patients, sometimes forget that people don't live in a vacuum.  They can't reasonably drop everything and spend every waking moment tending to the state of their health, even if their health is in a truly terrible phase.  Humans have so much going on in their daily round - work, grocery shopping, laundy, keeping up with relationships, housekeeping, carkeeping, the paperwork of life - we all know it is so easy to make poor eating choices and to also let the days slip by, one after the other, without any kind of exercise.  Heck, I would have to think back a couple days at least to figure out when I last ate a fresh vegetable or fruit!!  And exercise for usually just doesn't even hit my radar on a daily basis.  Even so, do I know it is extremely important to keep myself healthy, not only for my childrens' sake, but also so that when they someday are more independent and don't need me as much, I have the health and energy to do some of the things I have been putting off? Of course I know this. 

But there is another strange little quirk in my head, which is an aspect of losing weight I find hard to deal with.  Losing weight is so.....public!  It is so obvious to people that you're losing weight, and it's a good thing so of course they want to compliment you on your efforts.  There's nothing wrong with this at all, and it would be weird if I did lose weight and nobody noticed!  I guess it's a quirky thing for me only because I'm much more of a private person than I think I am, and so I'm not always comfortable with compliments/comments on my physical appearance.  And of course if people notice that you've lost weight, they are going to notice also if you gain it back, so it creates a kind of social additional layer of mental/emotional stress in the whole process.  So I've been trying to resolve this quirk somehow.  Losing weight is more about lifestyle changes than just losing weight, so I think if I lose weight very slowly, it won't be such a shock to those around me.  I have to do it slowly anyway, because any time I've ever thrown myself into exercising/losing weight I've done it too fast and hurt myself!  I'm too old for that!!  There's so much other stuff going on in my life, that to add exercising into the daily mix, it has to be a slow and steady thing, small increments, anyway.

Which kind of leads me to the topic of New Year's Resolutions...which is another post!

Later y'all,

Saturday, December 25, 2010


Well, it is Christmas morning, and the way our holiday visiting worked out this year, we went to church this morning and now are home for a few hours until going to my mom's house.  Otherwise I would never have had a moment to write! 

Church was, mercifully, a very small crowd today.  Apparently people do not generally go to church on Christmas morning, anymore.  I was surprised, B was not.  It was nice, though, because we did not have to park a long way away, the service was much simpler (and thus a bit shorter), and the majority of those there were people I don't really know well.  That sounds odd, I know...but honestly some days I find it a very nice change to be able to go to church and have it be more about worship than about socializing.  I wrote in the post just previous about how I sense an element of "fakeness" at times, when it comes to church congregations - you are there frequently enough that the faces are familiar...and sometimes you are praying for other church members regarding some pretty serious life issues....but overall you don't truly know the people around you.  But you all act as though you know each other quite well, because of the environment.  And yet you might see the same people at the local grocery store a few hours later, and it's like they've never seen you before!  So anyway, it was fine with me today that the service was a bit drier and cleaner than yesterday's services probably were.

Along the same lines, I am about done with Christmas-type music, and if I could I would probably start putting away some decorations today.  After a while it all becomes too much - too much celebrating, too much spending of money, too much food, too many desserts, too much of what comes to feel like self-indulgence.  I can't help but wonder if even the majority of the gift-giving done within these few days is really done because of that religious detail - God sending Jesus to earth, to be human for 30-some years, and die for our sins so that in turn we can look ahead to eternal life.  The act of giving gifts is a pleasant one, and I certainly wish I could do more of it for more people - neighbors, friends, family!  But I think humans take it to such incredible lengths at times, buying presents only out of obligation and spending far too much money, that the real reason we celebrate today is lost in the manic shuffle.  We personally have very little money to buy gifts, and so this has caused me to reflect on what gift-giving at Christmas is really about.  For me this year it was more meaningful to give/mail Christmas cards, because in the act of doing that I was able to actually sit down in the quiet of my house and really think about the people receiving the cards.  These days, with the very surface and transitory nature of texting and Facebook-ing taking the place of real, true communication, the mailing (actual mail, with a stamp, putting cards in the mailbox) of cards makes so much more of a connection with others. 

Wishing the world a meaningful Christmas,

Sunday, December 12, 2010


does going to church, often make me extremely crabby????

more on this later,

So, it's now 'later'.  To be honest, I really like the church we attend.  The people have been really pretty good about attempting to understand S's diagnosis, which helps. 

I think I am just constitutionally predisposed to 'not want to play nice', sometimes.  Sometimes we'll be sitting in church - this place that is meant to be one's true faith community - and I'll look around and think that 99% of the people sitting there really know nothing about me, or us as a family.  They might remember our names, maybe.  But I seem to have a talent for finding myself if situations where I know, deep down, I don't quite fit in.  This church experience has been no different.

B and I started attending this church just before S was born.  B grew up in a UCC church (Protestant), and I am still Catholic, I guess.  After we moved to our current residence, we needed to find a place to attend church where we both felt comfortable.  As a Protestant, B is "not allowed" to take communion in a Catholic mass; and the services at the UCC church where he grew up and where we got married felt too much like simple prayer services and not enough like Mass.  We felt we needed to decide on one church; to try and continue attending a Catholic church where B didn't feel welcome would just become confusing for the kids.  Luckily we found St. P's, which was traditional enough to suit us both.  It has been a good choice; I'm not sure it is ever possible to find a place to worship and grow your faith which always fits like a glove.  And perhaps, if I don't exactly always feel welcome at St. P's, it may be my own fault.  Possibly I put up walls which are easily sensed by others, I don't know.

Part of what gets to me at our church is the simple fact of income differences.  We have happenened onto a church community which, while located in an urban setting, has a congregation whose personal financial status often falls within the upper middle-class bracket.  That is definitely not us, at the moment, and I don't know that it ever will be.  Even if we won buckets of money tomorrow, I'm not sure I would turn into one of "them" - for one thing, we don't own a boat or belong to the yacht club.  I know I don't exactly "fit in" with most of the other moms in the church.  My clothes aren't quite as nice, my hair isn't cut as frequently, and my personality isn't as smoothed over as that of the women in the church who haved lived in financial comfort all their lives. 

So, maybe I analyze the differences too much.  Maybe I'm assuming what others' perceptions of me/us might be.  And really, the important thing about attending church and being active within one's church community isn't making friends or fitting in or, even, feeling "comfortable" on a regular basis.  I'm not going to church on Sundays to be reassured that I'm making socially acceptable or politically correct choices, right? It's about checking in with God.  So I guess I can do that.  I'm not in favor of church-shopping just because another family (or a whole bunch of families!) in our church have more money than we do at the moment.  I'm not in favor of bouncing around from church to church at all, actually.  God sent us to this church for a reason, I guess.

I do hope, though, that the parking situation improves SOON.  That was the source of my grumpiness today; it was ridiculous, I could barely get the car out of the parking lot.


Saturday, December 11, 2010

"Cave legit", or...

"let the reader beware". 

I think that if I am serious about wanting the world out there to come in here to my blog, and read what I write, I had better make a few things clear.

1) I am human, therefore, not perfect.  I make mistakes just like every other person.
2) I may post about a certain topic...and my thoughts/feelings/beliefs/opinions about that topic are subject to change.  Indeed, they are allowed to change.
3) I keep various aspects of my life and my family's life private...therefore, it should be obvious that you do not know everything about me.  Therefore, you do not know the circumstances which influence me or which cause me to write about various things.  Don't assume....anything about me, as you will probably be wrong.
4) What I write on this blog are my own opinions etc, and are not to be taken as the opinions/policies/beliefs of any organization which I lead or of which I am currently a part.
5) Although I do currently lead an organization for Prader-Willi Syndrome, that by no means makes me a "perfect PWS parent".  I don't have all the answers, and I don't profess to make all the right choices in this area.  My family does not live in a vacuum, where every move we make could be dictated by the vagaries of this complex syndrome.  Again, make no assumptions and do not judge, as you do not live my life.
6) If you read all the posts on this blog, it may seem like I am sort of a pessimist, or that my personality is more on the "melancholy" side than otherwise.  Perhaps that is true; but at the same time, I would say I'm just a realist, which means I am more likely to be pragmatic about life and allow the venting to co-exist with the rejoicing.  IMHO, people who do not allow their fellow humans to vent are vaguely passive-aggressive...and people who walk around with a smile plastered on their face for no apparent reason seem vaguely psychotic.

That's my story and I'm stickin' to it,

Friday, December 10, 2010

The enigmas of stay-at-home-parenting

Howdy, all -

Just around three years ago this month, I became a stay-at-home parent.  I had worked in our local library system since 1996, first as a library page (I reshelved books etc), and then as a clerk (that person at the front desk where you check out your books and, ahem, usually pay fines with a huge smile on your face).  While I only worked part-time all of those years, I still LOVED my job.  I used to say I never had a bad day at work, while with the library.  I love reading, I love books, I love talking about books, I loved the people I worked with, and I genuinely enjoyed working with the public.  I really did enjoy talking with the patrons (eventually we were supposed to call them 'customers') who came in for their books.  For the most part, they were friendly, and if they were regulars, it was very easy to get to know them and care about them, and for them to do the same for you.  It was very rewarding, and leaving there, while the right choice, dealt my understanding of Who I Am a huge blow.

You see, it has taken three years for me to get to a place, emotionally and mentally, where I understand that because I chose to have children, my first priority is to make sure THEIR lives are running smoothly.  The birth of my second daughter S, and the accompanying diagnosis of Prader-Willi Syndrome, pretty much made my decision to leave my job an imperative.  B's schedule is more flexible now, but in December 2007, he was leaving the job he had worked for 13 years, and starting with the retail company at which he still works now - with the crazy hours.  There wasn't any way for us both to work AND keep the kids' lives stable.  Well, according to B, we could have made it work, but I think it would have involved more stress than it was worth. 

Why has it taken three years to accept my choice, and really develop an appreciation of my 'usefulness' to my family?  Because, in the working world, the ability to accomplish tasks AND have one's efforts recognized is very, very rewarding - and there is a paycheck.  There is tangible, almost instantaneous proof of your efforts.  There is, for the most part, order, and organization, and logic, and sanity in the workplace.  There is also an end to the day; at 5 p.m. (or whatever), you can walk out the door, be DONE with your "job", and the rest of the day is fully and completely yours to spend however you choose....if, that is, you don't have children.

If you are a stay-at-home-parent (SAHP), however, here are the facts:
1) There is no paycheck.  You don't have a 401K or a pension plan (unless you are banking on the idea that your children will someday take care of you, which is a long shot). 
2) There is no health-care plan for SAHPs, and even if there were, if your children are very young it is mostly easier to just suffer through your sickness than try and make it to your doctor with your children in tow.  Too bad pediatricians can't also treat/prescribe meds for parents, because that is as close as many SAHPs get to a doctor.  Also, if your children are old enough and/or very observant, there are just some doctor's appointments during which you really don't want your children in the room.  So, what's the alternative? Well, most SAHPs probably just don't go to the doctor.
3) Since your home is also your place-of-work, it is difficult to truly get a vacation from your everyday job.  In order to get time for myself, in the months after leaving my paid job, I would have to physically leave the house.  Sometimes this was fine, but eventually I learned to use the hours right after my kids went to bed to do things purely for myself.  Hanging out in a Starbucks until they closed at 10 p.m., or using up gas driving around the neighborhood, lost their appeal - and I can't drink coffee after about 4 p.m. anyway or I won't sleep.  SAHPs are basically "on duty" from the time their children get up, until the time their children go to bed, and this statement is even more true if we are talking about single-parent households, or families where one parent works odd shifts or has a job where they are on the road or travelling for most of the week. I get antsy, when it gets close to my kids' bedtime, to move the bedtime routine along, because I am not "off-duty" until they are both in bed (so, most days, my "shift" is about 7 a.m. to 9 or 10 p.m.).  Because of his crazy hours or the amount of time he works, B has a hard time (sometimes) moving the bedtime routine along because sometimes that is the only time all day he sees the kids.  I'm anxious to get them into bed - yes, partly for selfish reasons - and he wants to talk with them, be silly, spend time with them.  I could say, 'okay, then I'm going upstairs to do my own thing and YOU get them to bed', but that usually backfires because, since S is used to a certain routine (and K likes me there too), the meltdown and a guilt feeling starts and I am usually back downstairs within minutes.  Also, B sometimes neglects to actually look at a clock and I often find that it is creeping past their actual bedtime.  Because I am with my kids all day, or very integrally involved in their lives, I guess I don't feel the need to be sentimental about their bedtimes.  I'm happy to do the routines - that's not something I really had myself, as a child, so I believe the routines are important - but let's not drag this out.
4) Because of the above statements, for SAHPs, vacations with the whole family ARE NOT REALLY VACATIONS.  All a family vacation is, for a SAHP, is taking their daily job on the road.  Because they are the parent most in-tune with the kids, they will also be the parent to pack for the kids (oh - and themselves - if they have time).  Since they are the parent at home and supposedly have so much more time, they are also the person in charge of planning the vacay, booking the hotels/cars/flights, buying the tickets for the attractions, contacting any family to be seen during the trip, arranging for the care of any family pets, deciding what to do about the mail/trash/lawn-mowing, doing the laundry for the entire family, attending to any car maintenance necessary for taking the trip, and all the other various details that come up.  (Again, a reminder - SAHPs have no paycheck, no pension plan, no health insurance, and no time to themselves).  And, all this has to be done while shuttling the kids here or there, refereeing their fights, making necessary shopping trips...basically, while still being in charge of all the regular day-to-day stuff.  While I know that family vacays make for some good memories, I repeat, they often are very, very far from being a true vacation for the SAHP.  At this point, my idea of a true vacation would be where someone else got all that stuff ready and made all the arrangements and decisions, all I had to do is pack, and go.

So, the enigma of stay-at-home-parenting?  It is an extremely skilled position.  It involves serious multi-tasking - many, many hours of your brain having to go in 5 directions at one time, remember hundreds of various details about both today, the future, and things that happened months ago.  SAHP-ing has its rewards, but they are for the most part internal rewards for the parent in question.  You don't get paid, and so don't have the assurance of saving for your own future needs.  You lay awake more nights, worrying about who will care for your kids should something happen to you.  Your kids aren't going to truly appreciate your efforts until they are much older and perhaps have children themselves.  For me, K may understand my life better at that point; S probably won't have real understanding until, perhaps, she sits down with God, in heaven.  As for my husband? I don't think he will ever understand, truly, what I do every day - because he will never be in the same position unless for some reason (God forbid) I am unable to do what I do now.  I do find it fulfilling, now, three years after leaving a paid job, to know that my kids lives run pretty smoothly, I can be consistent about making sure the bills are paid, I am better about being frugal, and I can truly be present for my kids because we are able (barely and not always) to afford for me to stay home.  I did seriously think about returning to a paying job, once both kids started the school year and were in school for 6 hours; but, the more I thought about it, I'm not sure the small paycheck I would earn would really make up for rocking the relatively calm seas we've achieved.  In the eyes of our capitalist society, perhaps the SAHP life vs. loss of wage-earning-years is not a fair trade.  Only time will tell.


Thursday, December 9, 2010


My husband has worked in the retail industry for just over 15 years, now.  At this time of year I often joking call myself a "retail widow", because of the absolutely insane hours my husband has to work.  Those of you who know me personally know where he works; for the rest of you I'll just say that he is the manager of a very popular, 'big-box' type store. 

I'm a veteran retail spouse I guess, after all these years.  I still think the retail schedule s*cks, but somehow we have made it work, in terms of remaining married and having children despite the fact that B is very often not home.  It's a very mixed bag, earning an income via a retail job.  For those of you who may not fully understand what I mean by the term "retail" - people who work in grocery stores, chain discount stores, department stores - basically anywhere that goods are sold/purchased - that's retail.  In terms of all those employees you see when you go to those retail places, consider the crazy hours they have to work, just to bring home a paycheck.  If your local WalMart is open 24/7, well, obviously the people who are staffing that store lead lives which look very different from all those out there working a 7-5, M-F schedule. 

Consider the just recently-passed Black Friday.  In order to be at his store in plenty of time to manage the onslaught of customers, my husband had to get to work by 2 A.M. Friday morning, November 26.  Which meant he went to bed at 8:30 p.m. Thanksgiving day; I hadn't even gone to bed yet, and he was getting up and eating his breakfast, at midnight.  He's not alone with the crazy schedule, either - heck, the ToysRUs chain had stores which opened at 10 p.m. Thanksgiving day, so people could go shopping.  Personally, the very LAST place I ever want to be, at any point during the Christmas season, is that particular store; I did it last year (not on Black Friday), and it was a pain. 

Now, I'm a good capitalist, like everyone else who lives here in the U.S.  I have no complaints, really, about our economic system.  And certainly, I am more than a little grateful that a) my husband has a decently-paying job and b) the company he's currently working for is not likely to go out of business.  I don't take either of those things lightly!  Nor am I in any way suggesting that any of us should stop shopping.  What I am saying is, when you are shopping, give a thought to the humans who help that giant retail machine run, day after day after day.  Maybe they love their job, maybe they don't.  Maybe they are trying to take their job at Target, or WalMart, or Publix, seriously enough that they can make a career out of it.- or maybe they are working just to pay the bills.  Either way, treat them with the same respect you would ask for in your own work atmosphere.  Just because they wear a uniform, or work a register, doesn't mean they should be the pound of flesh on which you take out your daily aggravations.  They are there, working, to pay their bills and in so doing are keeping our country running.  It sounds like simple logic, like "well, of course!", but it is so very easy to rush about and not REALLY see that person behind the counter...and then the least thing goes a-wry and that person gets the wrath.

Let me tell ya, folks, I also have been on the employee-side of that counter....understanding, and common courtesy, and some patience go a very long way in having that employee go the extra mile for you.  Keep that in mind, as we all try to survive this extremely busy shopping season!


Monday, December 6, 2010

Christmas cards: to send or not to send?

Yes, it's that time of year again....the time when you hear (even if only in your head) the age-old question: Do I send Christmas cards this year, or do I skip it?

Over the past week or so, I've been attempting, with some success, to go through all of our boxes of Christmas "Stuff" - the tree decorations, the wreaths, the tree decorations, the bags of holiday-themed gift bags, the tree decorations, the box of "Christmas mugs", and on, and on.  There is still a full box of tree decorations yet to be opened, and in my opinion, the tree would look just fine without putting that 100 extra things on it.  Granted, there are some slightly empty spaces, but to me that is perfectly okay.  As I said in a post a few days ago, putting the decorations up and out is so much fun...who is ever excited about packing them all up again?? Generally, NOT the people who were so excited to get them out in the first place.

I digress.

In the process of going through boxes, I came upon several collections of Christmas cards received in previous years.  One pack was actually dated 1992, and there were a few from 1994...both from before B and I were married.  Apparently in those years he was a lot more 'into' the sending/receiving/organization of these cards than he is now.  It was interesting, though, going through all these old cards.  Of course I found a handful which came from people I/we no longer talk to, or even remember in some cases...that happens, of course, with the sending of cards in the holiday season.  Probably every year, everyone sends and receives cards to/from people who are acting on the feelings of the time - a recent acquaintance, or someone you just recently worked with but won't be seeing anymore because of job changes, or if you run a business you're sending 'cards' to people who might be employing you at some point.  That's all to be expected.  I don't always keep those cards, and as I went through the last batch yesterday, I kept the pretty fronts of many cards which were generated out of situations like that.  I mean, you can't save them ALL - if you send and receive 50-100 Christmas cards every season, over just 3-4 years you will have a collection of several hundred cards....many of those from people you no longer see, no longer hear from, would never have picked up the phone to visit with in the first place. 

However, as I went through these old cards, I came upon between 5-10 cards which reflected important relationships which no longer exist, for various reasons.  I found several from elderly relatives or acquaintances who have since passed away; these made me pause, and think about those people, and about the last time I saw them, and how fleeting life really is.  I found one which is probably the last Christmas card from B's grandmother, signed in her own hand.  I saved that one; she passed away a few years ago.  Handwriting on a snail-mailed item is so rare these days that a card like that is extra special.  I found a few from two of my siblings, their spouses at the time, and their kids; those siblings have since gotten divorced, and reading those cards took me back.  If nothing else, Christmas cards remind you of the existence of people whose lives have touched yours in some way...sometimes in good ways, and yes, sometimes in less-than-positive ways.  Regardless, the card itself is, in a very basic way, a reminder of the tangible, living, breathing existence of your fellow human.  At some point, that person's hand picked up a pen and signed the card, or their hand at least touched the card in some way.  They inserted a photo, stuck on a sticker, attached a mailing label, put it in the mailbox.  At some point in their busy day, they thought of me

That's what a Christmas card some point in my frustratingly busy life, I thought of you.  You thought of me, by sending a card. An actual CARD, not an e-mail.  NOT a Facebook message.  Not an e-mailed Christmas card (which don't always work, anyway).

So, my vote on sending cards? Yes. Yes. Yes. Send them.  They indicate a moment in time when one human really thinks of another...and sometimes, for the recipient, that is the only time they have evidence that they lived, that anyone thought of them at all in a world that rushes and flies and scurries always to the next thing.
Send that brightly colored, glittery, simple, big, small, holiday card - even if all you write on the inside is "thinking of you, Merry Christmas".