Sunday, January 30, 2011


Matthew 5: 1-12

"When Jesus saw the crowds, he went up the mountain; and after he sat down, his disciples came to him.  Then he began to speak, and taught them, saying: 'Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they will be comforted.  Blessed are the meek, for they will inherit the earth.  Blessed are those who hunger and thirst for righteousness, for they will be filled.  Blessed are the merciful, for they will receive mercy.  Blessed are the pure in heart, for they will see God.  Blessed are the peacemakers, for they will be called children of God.  Blessed are those who are persecuted for righteousness' sake, for theirs is the kingdom of heaven.  Blessed are you when people revile you and persecute you and utter all kinds of evil against you on my account.  Rejoice and be glad, for your reward is great in heaven, for in the same way they persecuted the prophets who were before you.' "

From the sermon today at my church (hello Fr. Keith, if you're reading this):
"...The scriptures, the beatitudes especially, present to us an image of excellence that includes depression, shyness, poverty, foolishness, hunger, and ridicule.  The Scriptures today tell us to look for excellence in ministry in places, and people, and practices that our 'real' world would label absurd.  The Scriptures tell us that God's power, God's excellence, is more likely to be found and experienced at the bottom of the heap than at the top.  If that makes no sense to you, don't be surprised.  You're a normal American.  You have been spoon-fed - or perhaps spoon-shoveled [italics mine] - since birth, the standard capitalist/consumerist vision of excellence.  Mind you, there's nothing wrong with that idea of excellence, really. Just don't confuse it with the kingdom of God. [italics mine]  Don't confuse power, prestige, wealth, and comfort, the signs of excellence in our world, with the kind of excellence Jesus begs us to consider."

And lastly, to borrow from a book called The Shack .... 
the Lord is especially fond of you.


Friday, January 28, 2011

5-Question Friday!

1. If you had $1,000 to donate to a charity, which would you choose?
Without a moment's hesitation I would split the donation between the Prader-Willi Syndrome Association (USA), and the state chapter for that organization here in my state.  Both organizations have done, and continue doing, so much to improve the lives of individuals with Prader-Willi Syndrome (my younger daughter has this.).

2. Snow days: Do you welcome them happily or are they a pain in your butt?
Ugh, I really do not enjoy snow days!  I am totally NOT a play-in-the-snow person anymore - I don't have the right clothes for it!  Which would all be fine except I have two kids who are still young enough to want to play in the snow.  So I sort of dread snow days because going outside with the kids is such a production, and we can't really go anywhere because obviously the roads are a mess, so I get anxious wondering how to keep them amused all day.

3. What talent did you wish you had and why?
I would love to be able to play the guitar!  I also wish I could draw...I have a handful of true artists in my family, but I could not reliably draw a face/horse/cat/dog/you-name-it to save my life.

4. Are you a news, politics or celebrity gossip junkie?
Hmmmm.  I'm definitely not a politics junkie, although I do wish I knew more about politics.  I'm not a news "junkie" but I do find it interesting to know what's happening in other countries (like the turmoil in Egypt, what's that about?).  Celebrity gossip, probably the least "into" that of the three choices.  Now, book reviews or blogs/sites about books? I could read that all day!

5. What is your favorite "cocktail"? (Are you a beer person, a kiddie cocktail junkie, or perhaps you are more the "Cosmo" kind?! Anything flies...doesn't hafta be alcoholic!)
 If I could have some kind of drink every evening, it would probably be a Bailey's on ice...yummmm.

:-), Jen

Thursday, January 27, 2011

"Why can't they just...."

Comfortable life leads to insulated thinking?

I've been thinking about this particular post for at least a week now.  Since the title of this blog is "Say What You Need to Say", obviously I knew going into blogging that I would at some point be writing about topics that aren't...."easy".  This I think is one of those topics, and I hope that my thoughts here won't be misunderstood.

What I have found, throughout my adult life, is that having a comfortable life often leads those experiencing that comfortable life to be a bit more judgemental of others.  I have been at the receiving end of that judgement, and I have seen others be the recipients.  I am sure I  have fallen into this habit myself, of judging the decisions of others based on the idea that "oh, making that decision/life change was so easy for me, surely it is just as easy for that person."  I have even, sad to say, seen this insular, judgemental thinking happen even within the special-needs community.

I realize, humans are humans, and humans do indeed get impatient with those who seems to hunker down in their repeated bad decisions and wrong moves, and let the bad situations linger on and on.  From the outside of that situation, the solutions seem so easy, we think.  "If only that person would just do this or that, or say this, or eat this and not that, or do this exercise....yada yada yada".  Getting to those kinds of judgemental thoughts happens in an instant - and while my use of the word "judgemental" may seem harsh, those "if only" thoughts ARE a judgement on that other person's experience.  In thinking those "if only they would..." thoughts, we ARE saying in a way, that the experiences/life situations of that other person are not as hard/challenging/soul-searing as that person describes them.  We ARE making a judgement on their life -


I'll repeat, I have been on the receiving end of someone making a judgement about what I should do about a situation, based on their experiences in their own life of the solution to that problem being easy.  And for them, maybe the solution to that problem was easy....FOR THEM, and only because their particular, specific life circumstances made that particular lifestyle change a whole lot easier than it would be for me, here, within my own life circumstances. It is easy to fall into that trap, of solving everyone else's problems based on how easy it was for me to solve those same problems.

But, we just can't fall into that trap.  Here a hypothetical example, just to clarify: Perhaps I am financially comfortable (I'm not, but just for discussion), and thus the stress of wondering how B and I will pay even the most basic of bills like utilities and the mortgage is completely lifted off my shoulders.  This gives me ENORMOUS amounts of mental and emotional freedom, to think about and do other things.  Imagine also that because of this financial comfort I or my husband is able to be a stay-at-home parent, and thus to some extent my family has a better handle on eating healthy foods, getting lots of exercise, generally having a clean house etc.  Life in my house is thus relatively calm and peaceful, and our quality of life overall is pretty good.  We have a handle not only on present circumstances, but also can plan for and anticipate the future somewhat.  And then imagine that I, living this comfortable life, come into contact with another mom whose life is obviously more chaotic; perhaps she's a single parent working two jobs to support herself and two kids, her childrens' dad (or dads) are of no help, and things in her house are not exactly calm, or peaceful, and the quality of life is nowhere near that in my little world.  And then I find out that, because of the circumstances of her life, this mom feeds her kids fast food for dinner three times a week, and the kids generally eat the less-than-healthy school lunches.  And I, from my standpoint of an (in comparison) extremely comfortable, calm and peaceful life, start judging her choices, saying "oh my gosh, fast food three times a week??  Unhealthy school lunches?  Hours in front of the computer/tv all week long?  Oh my, what a horrible mother/parent/person!  Why can't she just....". 

WHOA, slow down.

I don't live her life.  I don't know what it looks like on a daily, minute-by-minute basis to be her or make the decisions she makes for herself and her family.  I should avoid, at all times, judging her or her life, because I don't know her.  Maybe, hopefully, she's doing the best she can with what she's got.  Maybe she's battled up from a much worse life situation to even get herself and her kids to where they are!  I am definitely NOT going to start preaching to her or others like her, saying that what she feeds her kids is deathly, what she lets them watch is poisoning their minds, what video games she lets them play will drive them to a life of crime, and what she lets them eat at school is the worst parenting decision she's ever made.  Maybe all those things are true, and being an intelligent adult I know I read articles on exactly those statistics.  BUT, coming from my relatively comfortable, not-nearly-as-problematic life, I have no business saying those things. Trying to help out in a tangible, non-judgemental way would be much, much more appreciated, probably, by that mom.  The problematic, stressful situations in that mom's life are caused by general societal conditions - the single-parenting, the cost-of-living which necessitates her working two jobs just to keep herself and her kids in a not-great apartment - and those are the concepts which need our attention and energy. 

Okay, that's my deep thoughts for today...apologies if it's not as clearly expressed as I would like, fighting a headache.


Monday, January 24, 2011

PWS questions #3: What is Prader-Willi Syndrome??

Q. "Prader-what?  I've never heard of Prader-Willi Syndrome; what is it?  How does it affect your daughter?"

A.  Without a doubt, every parent or close family member of an individual with PWS has gotten this question multiple times...and has probably also developed their own "stock answer" for it!

Prader-Willi Syndrome is a genetic syndrome affecting the 15th chromosome pair.  It occurs in 1 out of every 12,000 - 15,000 births - which makes it both relatively rare, and also more common than you might think!  PWS is the most common genetically-based cause of obesity in children.  It is found in both genders and all ethnicities.

PWS looks one way from birth to ages 2-6: Infants have extremely low muscle tone, a weak-to-nonexistent cry and almost no ability to coordinate feeding/breathing.  Many infants with PWS have stays in the NICU, and many are discharged with either naso-gastric or direct gastric tubes for feeding.  Infants with PWS are generally extremely lethargic and sleepy, and must be fed on a strict schedule as otherwise they would sleep to the possible point of starvation; infants w/PWS are generally labelled "failure to thrive" at this stage.

The PWS diagnostic process is usually begun shortly after birth, and while there are obvious clinical signs which SHOULD alert a neonatalogist/pediatrician to PWS, a definitive PWS diagnosis involves bloodwork.

This complex syndrome, characterized by poor feeding and slow weight gain at first, takes a 180-degree turn sometime between the ages of 2 and 6 years old.  The child with PWS begins to experience hyperphagia, which is an uncontrollable appetite and 24/7 feelings of hunger even after the child has eaten a regular meal.  The metabolism is affected with this syndrome, such that individuals with PWS gain weight twice-as-fast on half the calories.  This, combined with the hyperphagia, requires that the food/caloric intake of a person with PWS be strictly monitored at all time; without supervision it is possible for the individual to either consistently over-eat (which for them can look like the average person's 2,000 calorie day) to the point of morbid obesity/diabetes/heart complications.  Individuals with PWS require restricted access to food and constant supervision; without these measures it is then possible for them to consume enough food at one sitting to cause their stomach to rupture, leading to death. 

Individuals with PWS often also experience: Cognitive delays, gross-motor delays (walking), moderate-to-severe scoliosis, speech delays, dental PWS the hypothalamus is affected, and this small endocrine organ is extremely important to hunger/satiety, pain sensation, bodily temperature regulation, fluid balance, emotions, puberty and fertility.  So, you can see that once the hypothalamus is affected, as it is with PWS, this causes many, many ripples of consequence.

My own personal take on this complex, challenging, sometimes aggravating syndrome?  It sucks.  I love my S-girl and I don't need to "fix" her, but this syndrome puts her, and all the other individuals who have it, through h-e-double-hockey-sticks.


Saturday, January 22, 2011

"It's Good Enough"

This is the "motto" of my older daughter and her best friend...."it's good enough".  I think they came up with it while on their fourth or fifth attempt at making a purse/messenger bag thing out of duct tape.  Yes, duct tape.  A few years ago I think someone made a prom dress out of duct tape, and boom! it's a new trend.  Look around at T.arget or Catan's, you'll see 7 or 8 colorful varieties of duct tape.  Just wait, you or your husband will be using it next, to seal the leak on the sink pipe or something.  I am currently using some duct tape to keep the computer plugged in, because the cats/dog keep bumping into the outlet to look out the window, and the plug moves .0001 cm and the computer screen goes black. I love our pets but this is a bit annoying to say the least!

I digress....sorry.....

Anyway, I have to admit I was somewhat impressed that K and her friend had come up with this little phrase, in relation to a probably-somewhat-challenging project.  I would not want to try and do anything with duct tape, other than the obvious fix-it stuff, so I give the girls a lot of credit for attempting and finishing the bags!  Plus, I know K, and I know that if I had tried to do such a project with her, she would quickly have gotten frustrated, I would have gotten frustrated with her, and that would have been the end of that.  Picture big snarls of colorful duct tape, stuck to the tablecloth.  So the fact that the two girls figured out a way to get through this project without letting it frustrate them, impressed me.  My husband was not as impressed with the "it's good enough" phrase; I think his reaction was that it was just a rationalization for settling for a mediocre effort...but I think his reaction also stems from his natural parental worry that his kids don't push themselves hard enough. 

So, I was doubly impressed with the "it's good enough" phrase, coming from K and her friend, because they are only 11 years old yet they've struck on something I think people in general don't say to themselves enough.  Now, by this I mean, I think humans are often very hard on themselves - women perhaps much more so than men.  We pick on ourselves mentally, thinking our clothes aren't good enough, our hair isn't good enough, our financial status isn't good enough.  I'm not saying we should all become total and complete slackers at the job called 'life'!!  Not at all.  I'm just saying, I think people should slow down, assess the positive aspects of their lives, and for at least one moment in time say "hey, that's good enough"!  The house IS clean enough, for now.  The efforts at being a good parent ARE good enough, for now.   Your efforts at being a good person, at thinking beyond yourself sometimes, are good enough for this moment.  I guess, just breathe for a moment and appreciate all the "good enough" stuff in one's life that are happening right now, that don't necessarily need to be fiddled with. 

For me, this means I need to be more present for my kids - I need to realize that my parenting efforts thus far have been good enough, that I should relax and just enjoy my kids already - because for me to show my daughters that parenting is enjoyable IS good enough parenting, for now.  Sure there are things I need to work on and improve in this area - but constantly beating myself up mentally is not productive.  I stress about alot of things - even this blog, for instance - do I post enough, do people like reading what I write, should write about PWS more, etc. etc - BUT, for right now, this is good.  I wanted to "say what I needed to say", and I'm doing that.  I think the "good enough" phrase could be used more often in the area of marriage, as well - I should know, as I am totally guilty of thinking "is this it?  Bills we can't pay, kids that fight, a house that needs work...this is marriage??"  But you know what?  It's good enough for now....and let me say something else...20 years from now I will probably look back on things that I currently think are just good, and think instead that those parts of my life were actually pretty d*mn good and I just didn't recognize how good it was!!

It's kind of funny....isn't "it's good enough" exactly what duct tape is all about?  Something needs fixing, and you need to do something about it but all you have is duct tape, so you wrap some tightly around whatever it is, and you can sleep that night because "it's good enough" for that moment.  You do still need to address the problem with a much more permanent and lasting solution, but at least the duct tape lets you get through the night.  You can't rely on the tape forever since the adhesive does dry up, but it does allow you to move one step forward towards a resolution to the problem.

So I guess my advice is, people should stop beating themselves up about things which they are trying to make 100% absolutely perfect.  It's good enough for now....if it's something that you genuinely need to work on, it will rise to the top of your life and sit there...and THEN you can adress it.

Later y'all,

Thursday, January 20, 2011

7 years...Shwooo! Happy Birthday S!!

This beautiful little girl is turning SEVEN!!!!
It has been such an amazing seven years, since S came into our lives.  The fact that we even decided to have a second child is noteworthy in and of itself, as my adjustment to parenthood after K's arrival was more than a little rocky.  She was 4.5 years old by the time S came along, so obviously there was a little time in there!  And then, S's actual "birth story" was incredibly exciting - she arrived so quickly we didn't have time to even get to the hospital, and so S was born (with the help of EMTs) in our kitchen...we tried to go out to the ambulance, but S wasn't havin' that.  K, whose room is about 30 ft away from the kitchen, slept through it all!

Her amazing arrival was quickly overshadowed by her condition; she was sent to the NICU for an 11-day stay, because she had difficulty feeding and had extremely low muscle tone.  She was discharged at the end of January, and late in February, after a visit to a genetic specialist, we were told S was born with a rare genetic conditon called Prader-Willi Syndrome.  We had never heard of it...I know I was in shock, crying constantly, and scared to death.  Even though K was over 4 when S was born, I had a really good grasp on what newborn behavior looked like...and S just didn't look like that.  For several weeks, pre-diagnosis, I was trying to accept the fact that she might not make, incredibly frightening.  She was (and is!) a beautiful child, but my husband I were thrown, with absolutely no warning (pregnancy was completely normal), into the completely foreign world of the special-needs parent.  That picture to the left is a picture of the 15th chromosome, and the gene on the far left has an area circled at the top; that's the area affected, causing PWS, in S's case.  Oddly enough, I came upon this paper as I was standing in the kitchen, in almost the exact spot where she was born; I was shredding some very old medical stuff and came across this.  I also found the encounter notes from our first visit to the PWS clinic, and also a copy of the medical bills generated by my stay in the hospital and her days in the NICU....$32,000 altogether...and we met parents whose little ones had been in the NICU for several months...the hospital bills are incredible.

Birthdays, of course, are supposed to consist of only happy thoughts - especially when it comes to one's children.  This time of year....the actual date of S's birth...finding that xeroxed picture of the 15th chromosome, and the encounter notes...brings those days right back.  We survived, S is doing well, I think we are doing okay as parents of a child-w-PWS.  But those days are forever in my brain.  They took my whole world and shook it, really, really hard.  Hopefully I am a better person now, than I was.  Much as I hate the fact that S has to struggle all her life with the complexities of PWS, I wouldn't trade the past years for anything.

So it has been an incredible seven years with this little girl, and she is doing 100% better than we even expected, when we were first adjusting to this complex and challenging syndrome.  She is funny, and smart, and silly, fantastic!  Here's to many more years with both our girls!


Tuesday, January 18, 2011

This dog...

This is our dog, Henry.  Isn't he handsome?  We got him from our county's animal shelter in Feb/March of 2009; he was about 7 months old at that point.  He's gotten away from us a few times, and I have to say he is an extremely fast runner witha lot of nervous energy once he gets going, so I wouldn't be surprised if he had been someone's dog at some point (instead a stray from birth) and just started running one day, and didn't stop 'til the animal warden caught up w/him.  The picture just down to the right, where he has his favorite, red, outside toy, is from June of '09, and you can see he still has a lot of "puppy" in his look there.

Anyway....any thoughts as to what kind of dog he might be?  During the adoption process we read on his paperwork that the shelter thought he might be a sheltie/retriever mix, and when people have asked us since we brought him home, that's what I have said as well.  But I'm not really sure; a sheltie's nose has a pretty distinctive shape and Henry's nose doesn't quite match that.  He does have a lot of  the golden retriever "look" about him - but he just isn't that big, he's only about 40 lbs.  We have a golden next door to us and even allowing for genetic size differences, Henry is definitely much smaller in comparison.
I know there is now a blood test that can be done on dogs, to try and pin down this kind of information - but it is expensive, and it's not crucial to us that we know.  I'm just curious to see what all the dog lovers out there think!

He's such a good boy; I wasn't really crazy about getting a dog and only went ahead with it for my husband's and childrens' sake.  But Henry has become my buddy, and he's such a good boy.  The cats get their exercise by chasing him around - which adds some excitement to his day as well!  It has been a good thing so far!


Monday, January 17, 2011

Question from "BlogFrog"

Hello everyone,

First, a huge thanks to everyone who has visited here.  I so appreciate your visit, your comments, your insights!

Second, I thought it might be good to provide some background, not only on our life here but also some insight on the question I posed in BlogFrog, which was this:  "Does the title of 'breadwinner' = spouse is the maid?"

I have to admit right off that question was poorly worded.  It may have sounded, on first read, that the question reflected something I myself believe to be true, which is definitely NOT the case.  In fact, as the discussion progressed, I think I made it pretty clear that I believe exactly the opposite...that I firmly believe whichever partner is out there earning the money is in no way exempt from pitching in with the upkeep of the house, in whichever amount is reasonable and sane for them.

Now, inevitably some of those who responded - and I am so thrilled that people chimed in on the question, I really was/am looking for lots of insight on the issue - got the impression that my own marriage is in deep distress.  I invited all of them to come here and read the blog; there aren't hundreds of posts here, of course, but in the "marriage" subject category there are enough to provide some background on where I'm coming from.  I will say, very truthfully, that my own marriage has....reached maximum overload as far as stress level, I guess?  We've now been married 15 years, and we've known each other/been in our relationship for about 20.  So, that first burst of romance/infatuation/etc, well, of course that is waaaaaaaay in the past.  Real life takes over, and after the glow wears off, you get down to the nitty gritty business of shlepping through life and trying to stay sane, and pay the bills and do some decent parenting along the way. We are managing, I guess.  Becoming special-needs parents added a completely unexpected, constant level of stress and worry to what was already a stressed-out-situation.  We have struggled financially, and still are struggling - which is why, when I say I have every appreciation for what B's paycheck means to this family, I really mean it.  I perhaps need to show HIM that appreciation, though.

Every marriage has its problems.  And, I fully realize that to bring my opinions about marriage, and even the most surface details about my own marriage, into this cyber-reality is going to bring on some seemingly innacurate perceptions about me, about my marriage, about who I am as a married person.

Notice I said, seemingly innacurate perceptions.  To be honest?  Brutally, searingly honest?  Those folks who answered that question in BlogFrog, they clearly "get it" about how to be married, what it means....and they could probably see in one instant that I, clearly, do not get it.    Of course counselling was suggested, both marital and personal, which does not surprise me at all.  I've been down both of those roads, by the way.  They were helpful; we both learned things from that.

Some more background: I am the youngest of 10 children. I have spent most of adult life saying this about my parents' marriage: "they never should have gotten married".  Maybe a better thing to say about it is this: My mother should have loved my father without conditions, and my father should have stood up for himself better. As it was, my mother (I think - I was only present for the last 38 years of this) quickly decided that being vulnerable in a marriage relationship wasn't for her, and put up lots and lots of walls to protect herself from being hurt in any way.  My father, I think, probably gave up after a while (don't ask me where all the child-having played into this messed-up relationship.  I will never know.) - although I do have a very foggy memory of him giving my mother flowers at one point, for something.  I don't really know how my father feels about his marriage, and at this point I will probably never know.  Unfortunately part of the "collateral damage" involved in my mother's fear of being vulnerable, was that she subtly caused me, early on, to choose sides.  As I got older, since she never had anything good to say about my father, and eventually confided in me her bitterness and anger about being married at all, I too began to dislike my father.  I long ago lost any opportunity to grow a relationship with my dad - I was on my mother's side for a very, very long time. 

Rest assured, my parents are both good people.  I had a good childhood, and have lots of good memories and no more than the usual amount of bad ones....I guess.  I think my bad memories are more "memories of omission", as in, I don't remember my parents ever speaking kindly to one another.  I don't remember a time when my mother wasn't speaking in a hostile, defensive way to my dad.  I also don't remember my mother ever giving me the impression that being married, or being a mother, were fulfilling/happy/satisfying ways to live one's life.  I don't remember my mother ever saying complimentary things about my father, not in front of him or otherwise.  As I got older she started telling me what she told my siblings as well, especially my sisters: "don't get married, and don't have children".  [I'll say again, I have already been to counselling.]. 

What a dichotomy.  Here is this ultra-Catholic woman, staying married and having lots of children because the church told her to, turning around and telling her kids "don't get married, and don't have children". 

So that's some background on where I'm coming from.  I am at a point where I either take a path completely dissimilar to that of my parents in every way (and therefore, very very foreign to my own psyche)....or I give up, decide I'm not strong enough, think only of myself, and head off to Montana or something.  [Don't worry, I'M NOT GOING TO DO THAT.]  I'm hanging on for dear life, to what God has blessed me with - a great man for a husband who still loves me despite my screwed-up background; two great kids who are just fantastic; and a stable and peaceful life. 

By the way, my parents are still married.  Still. married.  Still living in the same house.  I mean, really???
I'm not even sure how to interpret that, anymore.  Do I take it as a sign of something positive about their relationship?  I'm not sure our lives would have been all that great, had they actually gotten divorced at some point.  I and all my siblings have turned out pretty well, all things considered; no jail time (well, none that I know of!), no addictions, we're all pretty stable people with pretty stable lives.  But without a doubt, the screwed-up dynamic my parents have cultivated has, no question, affected me and my siblings.  Of my nine siblings, one is not married, and of the eight who did marry, four of those got divorced...look at that, there's your 50% divorce statistic, right here in my own family.  So, as I said, I am hanging for dear life here, trying to bring myself to a big, screeching halt because I can literally see myself making my parents' mistakes.  So when you look at my "Books In The Pile", and you see those faith-based books....those are helping me hang on.  I know it takes two people to make a marriage work or not, and undoubtedly B has done his part to make our marriage unpleasant at times.  We're all human and nobody is perfect.  But, at this point, I'm realizing I can't even expend the energy thinking about what he might be doing wrong, because it may take everything I have just to adjust my own perceptions of married life - and fix what I have been doing wrong - so that I don't screw up the lives of three other people.

Well, that's enough for tonight, I think!  Thank you for visiting the blog and reading all this.  And don't worry, I am making progress, with God's help (and I'm so thankful for the women in my Bible-study group, hanging with them has been such a blessing!!). 


Sunday, January 16, 2011

Closing that door?

So I had a plain ol' doctor's appointment the other day, and as we are chatting about this and that, and she's going over my medical record talking about medications and such, she asks if we are planning to have any more children.

I automatically blurt out, oh, no I don't think so.  And we move on to other things.

I'm 38 years old. At this point, were we to have another baby, I would be in the "high-risk" category, perhaps even more so because of the genetic syndrome S has, and how she arrived (quickly, in our kitchen, with little/no labor).  So there would a higher level of concern to deal with, as to the health of the baby and my health and so on.  We did consider another child, about two years ago....and it just about sent me into an absolute panic!  At that time, B insisted he was fine either way - another child, or keeping things the way they were; now he says (and I kind of agree!) that we are getting too old to handle having another baby in the house.  Plus, I don't know where we'd put another child! Each of our kids has their own room now, and I don't know that they could sanely share a room - they aren't even that successful with just sitting in the same room now, as there are behavioral aspects of S's syndrome which K does not yet fully understand, and which drive her crazy.

So anyway, my 'clock' is ticking away, and my instantaneous answer to my doctor's question about more kids is now giving me a moment of "hmmmmm".  I mean, I truly don't feel a huge desire to have more children.  At the same time, isn't it difficult to really, truly close that door (or let nature close it, I guess I should say)?  To really put that possibility aside, once and for all?  I have to say it gives me a twinge of unease to really accept that that part of my life is over and done with.  Being pregnant was just a fantastic experience.  Both kids' births were amazing and incredible experiences.  And while adjusting to parenthood almost lost me my sanity, I wouldn't change it.  So it is somewhat difficult to answer the "more kids" question definitively, to really close that door and accept the idea that having more children would probably not be a great choice for me, or for us. 

How do some people seem to know that their family is not yet complete?  You know, when a couple already has a few children and you're thinking "oh, they're done having children", and then one day they say they're going to have one more "because they just felt their family wasn't complete yet"?  For me, part of the reason I changed my mind about more kids after we had our first child was because I wanted her to have a sibling.  And then S came along, with the PWS diagnosis, and our entire world turned upside-down and inside out, and we have this whole new life to which we needed to adjust.  We no emotional or mental room for considering the size or completeness of our family!  And now, sometimes I find myself thinking, what if K needs someone to help her care for S someday?  Or even beyond that, what is S's life is shortened because of this blasted syndrome, and K finds herself somewhat alone??  That thought just tears me apart inside.  That thought just makes me hate this PWS all the more, because complications of this syndrome will not only affect S's health, but will affect S and K's lives as sisters.  I love my sisters.  They are such a huge part of who I am, and it just breaks my heart when I ponder that someday, K might not have her sister...or any siblings.

So this "any more kids?" question, is so loaded with extra meaning and significance for me.  I kinda wish God would make it really clear that not having any more kids, and investing myself fully in the girls I already have and being a good parent and not worrying about their futures, is the way to go.  The clock is ticking.

Saturday, January 15, 2011

THAT question

Well, it's actually not a's more of An Uncomfortable Conversation I'd Rather Not Have With My Six-Year-Old.  I'd much rather put it off until she's maybe sixTEEN, when there's a better chance she might understand my answer.

S has pretty much always been into baby dolls.  She has two baby dolls and two Bitty Twins, and her collection of "baby-doll-paraphernalia" grows with each Christmas and Birthday.  These are the only toys she plays with consistently.  S also pays a great deal of attention to those women we see, when we're out somewhere, who are pregnant.  And, if the pregnant woman happens to be someone she actually knows - for instance, her initial kindergarten teacher was pregnant at the beginning of that school year, and I think that was S's first instance of being that 'close' to a situation of pregnancy - then her interest doubles.  As with other children-w-PWS, her sense of personal boundaries, and social correctness, is sometimes questionable - so at times her interest in pregnant women, or babies, is definitely uncomfortable for me, if not for the person she's staring at.  Yes, I know she's only 6 and a small amount of this is "natural".  The difference here, between S and her peers, is that her interest baby dolls and babies and pregnant bellies will likely last long past the point of being "appropriate for her age", and perhaps will be a hobby of sorts which she carries into adulthood.


Because I don't think S will be able to have children of her own. 

That is the "question" I refer to in this post's title - the "will I have babies, Mama?" question.  Up until yesterday I've been able to successfully dodge the issue and not truly answer that question.  I think it's fine that she plays so convincingly with her baby dolls, but I have to confess, when she pretends she's "pregnant" and says there's a baby in her belly, I cringe.  Yesterday as she was getting into the bathtub, she did this again, and she of course noticed my reaction - because I've had that reaction before.  So we got to talking about this issue, of her having children.  Now, as I said, she's only 6 so there's a great deal about the whole process of having babies which I of course would not go into with her.  But she's becoming more insistent on knowing why I don't like her pretending she's got a pregnant belly, and so last night I finally just told her, "I'm not sure you'll be able to have children".  In answer to her "why?", I simply said, because of the Prader-Willi Syndrome she's made a little differently, and that grown-ups with PWS are usually not able to have children.

Now, let me say here that that last statement is not precisely true.  There are just a few known cases of an adult woman with PWS giving birth, so physically speaking, it is not impossible. the same time....

We all know there is so much more involved with having a child than simply the physical side of it.  At some point I will, hopefully, be able to help S understand that while her body might be able to "grow" a baby, there are entire pieces of her emotions, intelligence, and brain which are probably not equipped to handle the rigors of actual know, the day-in-day-out, mundane, stressful, complex management of a relationship with another person who depends entirely upon its parent for protection and sustenance, etc.  I know that when S was first diagnosed, we had to adjust our assumptions about her future, and understand that S's life might not include children of her own.  At the time, it wasn't a huge deal, because it wasn't the biggest issue we had to contend with.  But as she gets older, and it becomes clear that she's pretty smart and thus might also be pretty observant, I'm wondering if she will become increasingly sensitive to the ways in which her life path might not exactly be able to mimic that of her peers.  She's understanding more about the syndrome itself, and I hope and pray that as she grows up, she'll also grow to understand that she'll have a good life, and have people in her life who love her, even if she has to do things a little differently.


Tuesday, January 11, 2011

Books in the Pile!

I just edited the "Books in the Pile" section, over there to the right.  Some of those titles had been on there for a while!

I still haven't finished reading "Uncle Tom's Cabin".....ugh.  It just hasn't been a "page-turner" for me.  I still want to finish it, but I think I would be somewhat more interested in reading about the affect/influence the book had on the whole slavery issue, and even possibly on the whole African-American/black experience in the U.S. 

I just started reading Lonesome Dove - yes, this is the book upon which the t.v. show (? or movie?) was based.  I think there was also a "Return to Lonesome Dove" which was definitely a t.v. show.  I'm not too far into it, but I already like it.  Very vivid.  It is a western, which is a genre I'm not very familiar with; it is also a really long book, so we'll see how I last with this.

You'll also notice, on that list, a few titles with an obvious working on my faith life emphasis (The Jesus I Never Knew, Women of the Bible).  Do not be scared, do not be alarmed - I am not what is stereotypically called a "Bible thumper".  I'm just in the middle of a very difficult process, called "trying to figure myself out".  And, folks, I have tried to depend only on myself, and my knowledge of myself up to this point - and it has not been successful.  I am a regular church-goer and have been my whole life.  I grew up Catholic, and B and I made the choice in 2003 to search out a church where, to put it very simply, we could both partake of Communion.  Thus we are currently attending an Episcopal church; and over the past 6+ years, whether because of the intensity of our life experiences, or because of this church specifically, or both, my faith has been greatly enriched.  I also am part of a Bible-study group which is just starting the Women of the Bible. I can already say I have learned from/been affected by this book...and we are only into week two.  All I can say is, God was there at my beginning and he'll be there when my days here are is a good thing to get to know Him.  It has helped me deal with my life already.

More books later!

PWS questions #2

Q. "What is 'GH therapy', and why do children with Prader-Willi Syndrome often do this?"

My answer:  "GH therapy" stands for growth hormone therapy.  Children who have Prader-Willi Syndrome are, very often, given daily injections of human growth hormone.   In June 2000 growth hormone was the first (and to date the only) drug approved by the U.S. Food & Drug Administration (FDA) for the treatment of Prader-Willi syndrome. GH therapy, if not covered by health insurance (or Medicaid, or a combination) would cost around $12,000 a year.  Families living outside the United States often have a much more difficult time starting their children on GH th. before the age of two, and sometimes it is difficult to obtain it at all.  It has been shown, by clinical studies done within the last 5 years, that GH therapy can (in most cases) be safely begun in infants, and also that it continues to provide benefits in individuals-with-PWS all the way up through adulthood.  However, GH therapy is not a "cure" for PWS.  It definitely does help make some aspects of the syndrome more manageable.  But it is not a mandatory treatment, and there are parents who choose not to pursue it with their child.

So, what does GH th. do for individuals with PWS?  Well, that word "growth" provides some idea of the benefits of the daily injections.  But there is a whole list of benefits, "including but not limited to improvements in lean body mass, decreased body fat, increased bone mineral density, normalization of adult height, improved strength, agility, motor development, improved nitrogen balance, and improved energy expenditure" (quoted from the Clinical Advisory Board Consensus Statement from PWSA(USA.) ). For S, I firmly believe that she would not be doing as well as she is, at the moment, had we not started GH therapy.  We began this with her when she was just 10 months old, but clearly, reading the above list of benefits of the therapy and having met adults who have recently begun GH shots, it is beneficial for individuals-with-PWS regardless of when they begin it.

S does not mind the injections.  Even with the heightened pain tolerance which is part of the syndrome, she does still feel the needle, but I think she is used to it, and B and I just get through it and make as little fuss about it as possible.  If we were to really zero in on whatever pain she might feel from the injections, the process would quickly become a huge production - and I have no desire to have to pin S down to do the shots.  I'm sure she feels it.  She occasionally has bruises in her injection sites (left and right thighs, left and right buttocks).  In time we may be able to add left/right sides of the abdomen as well).  At some point she will probably be really excited to be able to give herself the shots - she is really, really interested in anything medical in nature (she'd probably request her own box of those plastic gloves).

So, that is my "explanation" of growth hormone therapy!


Wednesday, January 5, 2011

PWS questions

Hi all,

One thing I want to do with this blog, especially for friends/family/acquaintances who may be reading and who may have questions about Prader-Willi Syndrome and how we live with it, is answer some of those questions.  Or at least, provide answers to some of the questions which I think the general public might ask, if given the opportunity.  So here goes, question #1:

Q.  "Since S has PWS and, because of that you are supposed to be counting her calories and watching what she eats, why then do you still go to McDonald's or go out to eat?"

A.  Ah, yes.  The McDonald's question.  Well, I guess my first response is that, even though S does have PWS, and even though that does dictate a good deal of what and how I feed my family, PWS doesn't - and can't - control every single aspect of our lives.  Perhaps if S were and only child, as a family we would definitely live differently.  But, she is not an only child - we have two daughters, and K does not have any eating restrictions.  She doesn't even have any food allergies, and she doesn't have any weight problems.  In addition, she is a busy 6th-grader who, two evenings a week, takes a dance class at a studio which is at least 20 minutes away.  Because of that and the time at which her classes happen, the dinner choices on those two evenings are affected, whether I like it or not.  So my options on those two days are these: eat out (hence McD's for one of those days), or eat dinner at home at what I consider to be an insane hour (4:30), or pack some kind of "dinner" into a cooler and eat it at the dance studio. 

However, sometimes, even with the presence of PWS, parents have to make choices.  Because I am able to purchase a calorie-restricted meal for S at McD's, I choose to do that so that the hours surrounding our excursion to the dance studio don't turn into a huge production - which in and of itself would definitely "up the stress level" for myself and the girls.  I try to make life as simple as possible for all of us, while still attempting (for the most part, successfully) to keep S as healthy as possible.  (And please spare me the "McD's food is the least healthy food on the planet lecture".  Thanks.)  I have said this before: even with a PWS diagnosis, my family does not live in a vacuum where everything can be dictated by the vagaries of the syndrome.  Does S's health still take priority, when we are having a meal? Yes, indeed it does.  Do we still control her portions, and consistently remind her that we have to follow the rules when it comes to food?  Yes, indeed we do.  At the same time, I am required to find a livable middle road between one child who has food-based health concerns, and an older child who has none.  S's imperative is "when will we eat next, and what will it be?"  K's current imperative is living life as similar as possible to the way she sees her peers living it.  My current imperative is somehow find the livable center amongst the two of them, while maintaining my sanity.  Does this sometimes mean eating out, and as we do so making the healthieast choices we can for S? Yes.  Much as the PWS purists out there might disapprove, this is what we have found, that works for us.  Some families go completely vegan/vegetarian/glutein-free/low-carb/high protein, as soon as the PWS diagnosis enters their lives.  Some families completely stop going out to eat at all.  Some families swear off any and all foods that they consider "unhealthy". Whatever works for them is fine, and if their child/children are still well-cared for and healthy, and thriving, then they've made reasonable choices.  In our case, B and I chose to keep our lifestyle as even-keeled, and realistic, as possible - especially because we have two children. After all, it is possible that we won't be the only ones caring for S her whole life; and we ourselves don't live in a bubble.   

I guess the bottom line, in answering a question like this, is just as PWS manifests differently for every child diagnosed, so does that child's family adjust to and deal with it differently.  What works for us and for S, might not work for another child/family.  I know there are probably quite a few parents out there who might judge me quite harshly for how we deal with things.  But, it is what it is, and we do the best we can - and for all of our potential mistakes in this area, S seems to be doing just fine.


Tuesday, January 4, 2011

Yikes, what a weekend

I guess I should make some things clear, so that those reading this who actually know me don't get the wrong idea. 

I hesitated even using the word "divorce" in my post just previous.  It is such a powerful word, and I do not throw it around lightly.  Every marriage has problems, and we all know that.  And I am fairly certain that every married person, at one point or another, daydreams fondly of what life would be like were they free of the responsibilities and demands of marriage/parenting.  Co-habitating with another human is one of the most challenging things to do - so challenging, in fact, that I wonder how so many of us manage to do it.  I mean, do we all really want another human in our space all day, every day, with their quirks and noises and irritating habits?  It is very hard, let me tell you.  The capacity of "love", whether romantic or Christian, to withstand all things and forgive all things is truly tested when two people live together.  At this point, for B and me, some things definitely do need to change on my part, going forward.  Because, if they don't, I'm not sure what will happen.  Or rather, I do know what might happen, and I shudder to think of what that would do to K and S.

This weekend was certainly not the first time my husband and I have gotten into extremely hostile conversations.  We have been under an increased amount of stress since we became parents at all, let alone parents of a special-needs child.  B and I have definitely had problems.  Maybe they started soon after we married...probably so, since in some aspects the problems have their basis in my personality, and I was obviously there from the start!  You see, I don't remember having those romantic, sentimental, warm-fuzzy thoughts about being married, or even having daydreams about "having someone to love".  If you go by the commercials on t.v., young people getting married are supposedly having constant daydreams about their future life with their spouse.  You know, the little home they'll have together, the little family they'll start, how wonderful it will be to do everything together.  I honestly do not remember having those daydreams.  Other than the basic, obvious details of moving in together, opening a joint checking account, that kind of thing - other than that, I didn't really, truly consider what being married really meant. 

It means sharing, folks.  Lots and lots and lots of sharing.  You share your love, your space, your bed, your money, your time, your habits, your food choices, your decorating's all gotta be mutual, and inevitably, one of the newly married young people is going to have to compromise (read: "give in").  And I definitely did not grow up with parents who shared, were affectionate, compromised...or even, by the time I came along, exhibited any ability to be civil to each other.  My mother had put her walls up years before, and by golly she was not going to leave herself vulnerable in any way, which meant that she had pretty much shut my father out of her life.  So that was my example, as far as married relationships went.  So the whole idea of being vulnerable to another person, for the sake of love, that's just not part of my psyche.  And not only am I suffering and struggling because of it, I am hurting my own little family as well...this weekend provided vivid proof of that, unfortunately.  I'm pretty sure K is convinced that her parents will be parting ways soon. 

The only thing, or rather one of the bigger things, that will keep that from happening is if I somehow work on my trust issues, and hopefully in the process, somehow come to believe I am worthy of love....I guess?  I'm just foraging around, at this point, trying to figure out what to do, trying to salvage something out of the mess I have made.  I'm not saying B is perfect, and it takes both spouses to make or break a marriage, so I refuse to lay all of our problems at my feet.  But, wow, this weekend was really awful.  I am very nervous; going forward from here, if I am to really listen and remember and pay attention to some of the things B said this weekend, I will need to make some changes.  I do a lot of thinking about myself, MY needs, how life has done ME wrong, what I want to do, why life hasn't been fair to ME.  And yet, I have so, so much to be thankful for, you know?  I mean, I am able to sit right here, with my mug of coffee, in a quiet and peaceful house, and write - and how much of a blessing is that?  It doesn't change the fact that there is laundry to do and I will be doing it - again; or that there are piles of paperwork to do and I will be taking care of that - again.  I don't know.  Life is such a mixed bag.  I have a good life.  Should I just be thankful for it, and move on?

So bewildered and mentally tired,

Saturday, January 1, 2011

Adam, Eve, the apple, and marriage

Not the greatest day, today.  It started off well, something gave my husband the idea to do breakfast in bed for me, so I was woken up by him and K and S, saying "Happy New Year" and presenting me with a tray and a mug of coffee.  Not bad, and totally unexpected.  I don't think I've ever had breakfast in bed.

Last night sucked, however, and during our drive to my in-laws' house for lunch, B and I got into another argument which, by the time we were within sight of his parents' house, got pretty ugly.  K went into the house crying, and I was sooo very tempted to restart the car, and drive away.  After all, given the words B and I exchanged in the car, and were he to have repeated to his family any of what I said to him in the car, the in-laws' house was technically in that moment enemy territory.  To put it more simply, should B and I get divorced, I would most definitely never be welcome in my in-laws' house again, and I have no doubt that B's sister would be happy to tear my personality apart.

Marriage is really, really hard.  It is probably harder, overall, than the effort and drive and perseverance it takes to climb Mt. Everest.  Why?  Because marriage is made up of so many valleys, and a precious few peaks.  I'm not good at being a married person, and it becomes more and more clear to me that this is because I am not good at sharing.  I don't trust humans, and sharing involves trusting others to some extent.  Sharing one's life within the context of being married involves making oneself vulnerable....very, very vulnerable.  As I said to B today, in a marriage, someone is always being taken advantage of.  Always.  That can really stink, you know? 

Let me tell you the scenario that ignited today's very hostile conversation in the car.  It is somewhat of a tradition that every year on New Year's Day, B sprinkles birdseed on the front step, for good luck.  Well, I had purchased some birdseed last week, for just this purpose, and had already threw some out on the patio - I can't really just throw it into the backyard as Henry (the dog) would probably eat it.  However, over the past few days I had realized that throwing it on the patio wasn't the greatest idea, as the birds generally leave the bits they don't like, and those were getting tracked into the family room every time we took Henry in/outside.  Which meant, generally speaking, that throwing birdseed on the patio would inevitably mean more vacuuming for me (of B and I, I do the vacuuming much more often).  So today, when I saw that he had thrown birdseed all over the patio and on the back step, I got the broom and swept most of it off to the side, right before I got in the car.  I then get into the car, and explain to him why I did that, since he had just thrown it there.  I believe I also said, "you're not the one who will be vacuuming all the birdseed off the family-room carpet, so don't make more work for me by throwing birdseed on the patio".  So this turned into a hostile discussion which lasted pretty much all the way to his parents' house.  Good times.  Given what we were saying to each other, K got pretty upset and starting crying.  It was unpleasant all the way around.  After B and the kids went into the house I sat in the car thinking, somehow I just have to get through this day.  B and I did talk some, while at his parents' house, but we didn't solve anything.  Life will go on, just as it always does after stuff like this.  Maybe I'm petty, sniping at him about the birdseed, because I am the one feeling taken advantage of, most of the time.  I very much dislike being on the receiving end of someone else's assumption that, because I'm the wife or the mother, therefore I'm supposed to clean up after everyone AND smile with happiness while I'm doing it - as if that's all I ever wanted to do with my life is be the maid.

That's what really gets to me about the whole structure of marriage, especially where there are children involved.  I mean, is that my trade-off, here?  Because he's the one out there earning the money, I'm then expected to clean the house/raise the children/take care of everything - or else?  Think about it.  If I were to say, I can't stomach the unfairness of marriage anymore, and B didn't like this and decided to file for divorce - I'd be left with nothing, right?  I'd pretty much be reduced to poverty level, because as a "housewife" I'm not earning a paycheck.  I have no pension plan, no 401K, no health insurance.  I'm dependent upon my husband for all of that, at the moment.  Could I go out and get my own job right now, and so provide myself with some financial safety in these areas? Not really, because then in my opinion, K's and S's lives would be thrown into unhealthy turmoil, at least for a little while.  If I decided I really didn't want to deal with the unfairness of the marital relationship anymore, and filed for divorce myself, I would instantly plunge not only myself but also my kids into poverty-level living, simply because I do not have, nor could I earn anytime soon, the salary that my husband makes. The health insurance that covers the medical needs of my children might be thrown into jeopardy.  Where does that leave me?  Well, it leaves me between a rock and a hard place.  Right now, at this time in my life, "marriage" means sucking it up and being the maid/cook/housekeeper/secretary (a role which I often find thankless, demeaning, and demoralizing), as a trade-off for being married to a responsible adult to who goes to work, works hard, and earns a paycheck to pay the bills.

Do you see what I mean, about marriage creating a situation where one of the spouses is very, very vulnerable and almost certainly taken advantage of? "But wait", you say, "what about the love you enjoy from your husband and children?  What about the supposed fulfillment involved with being married, with having a companion for life?  What about the blessing it is is be able to stay home with your kids?"  Ummmm.......well, I guess those are great things - but I can't pay the water bill with those great things.  Unfortunately, our society doesn't care about any of that, when it comes to paying the bills.  And I say again, I only 'get' those things IF I'm willing to continue on in the thankless, demoralizing roles of maid/cook/housekeeper/secretary.  That, my friends, is a very costly trade-off.  Very costly.  It is starting to cost me my sanity.  The unfairness inherent in the institution of marriage just stuns me, most of the time.

But, on the other hand, maybe I'm reading the situation all wrong.  I'm certain there are PLENTY of people out there who would look at my situation and say I'm absolutely insane for complaining about any of this.  That I have a good man for a husband, we are able to (just) pay the bills (most of the time), our kids are pretty healthy overall, and we live in a safe neighborhood, etc, etc, etc.  Maybe I am totally crazy, I don't know.  B says he just wants me to be happy....but I'm really afraid that what would make me happy would be to be on my own, not married, not responsible for the kids 24/7.  What right do I have to screw up his life, and the kids' lives, by going off on my own?  Are they happier with me, or better off without me?  I don't know, I don't know, I don't know.

The title of this post comes from a thought I had, sometime in the last week or two - if Adam and Eve had never eaten that blasted apple, what would "marriage" look like today?  Would it be more fair, for both parties?  Would men play more of a role in the hands-on aspects of raising children and caring for a house?  Would women then have and equal opportunity to use their skills and talents in the working world?  Would committing oneself to one person for life be as hard?  I wonder. 

This is me, folks.  This is real.