Pushing the envelope

Pyrope is a laid back kid.  Much like Jet.  He doesn't have motivation to excel.  If he can do it, that is good enough.  He doesn't want to be the best.  If it is hard or he can't do something, that is fine.  He'll do something else.  I wish he would try more to do things that are hard for him.  Or try to do things he can better.  I have to provide the motivation for these things.  I think this plays into his poor attention.

There is one exception for this.  Hockey.  Ice hockey to be exact.  Neither Jet nor I are much into watching sports.  However, I do watch ice hockey when I get a chance (for reasons I don't understand, there is very little televised ice hockey where we live, although it is a large sport for boys around here).  I was watching an ice hockey game during the 2010 Olympics.  Pyrope walked in the room and instantly was in love, obsessive love.  He wanted to know what it was called, then a host of questions.  He wanted to play.  The next weekend, we took him ice skating for the first time.  We told him he could not play ice hockey until he passed a certain level of ice skating lessons.  Thinking that he would give up long before that point.  He has focused and practiced during ice skating lessons like no other activity.  Focus is usually a problem, not at all of skating.  The man who runs the learn to skate program is excellent.  As in he is nationally known for running a very good skating program.  Every time Pyrope sees him, he talks to him about playing hockey and asking if he thinks that Pyrope is ready to move onto hockey.  While the hockey program does its own thing for the most part, they deffer to this man if the children are ready for hockey from an ice skating point of view or if they are better served with learning to skate better first.  (Parents can always "overrule", but from talking to the parents who have elected to do that, it rarely turns out well)  At open skate on Thursday, Pyrope got the green light to try hockey.  Today was the first informational/weed out kids who are not ready session.  Pyrope attended the whole time.  He never got distracted and did his own thing, as many kids were doing, but he listened, waited in line, followed the directions, and gave each drill his all.  There were 47 little kids on the little practice rink (the length of this rink is the width of a standard rink).  It was crowded, and chaotic.  It was interesting watching the wide range of everything.  Kids that did not want to be there but their parents were making them.  Kids that just couldn't pay attention and were skating around doing their own thing.  Kids on the ice who could barely stand.  Kids in full hockey gear.  Kids not even wearing gloves.  Kids wearing bicycle helmets.  Kids without hats.  Pyrope remained focused.  The times he fell was because he was pushing it as far as his ability took him and a little more.  He tried to go around the cones a little faster than he could handle at times (most of the time he remained on his skates).  He tried to stop a little more quickly than normal, most of the time this worked too, but not always.  He aggressively tried to get the tennis balls up off the ice before others could get to them.  Off the ice, he is one of the most passive kids I know.  He never tries to beat another kid to a toy.  If someone else wants something he has, he typically willingly gives it to them.  On the ice, in any related to ice hockey, he becomes the other person.  Aggressive.  Pushing the envelope in his abilities.

I like it.  I wish it was a little bit of a cheaper sport/activity he was so passionate about, but I'm glad to see it.  I'm glad that this is entirely of his own doing.  This is not a passion of Jet or mine, or any other family member or close friend.  This is Pyrope's.  I currently am seeing many many practices and games in my future.

A different culture

After a very long day yesterday, I found myself standing in a Star*ucks this morning at 6:50.  What should have been me being in and out to pick up some coffee wound up with me standing around where you order and get your drinks and food.  I know of Star*ucks, but prior to this morning I don't think I had ever spent more than a couple of minutes in one.

I decided it was a different culture.  Everyone (but me) seemed what to do and the language to speak.  If the line was long, you told your drink order to the lady making drinks.  Most of these orders were 6 to 7 words long it seemed to get one cup of specialized coffee.  They seemed to make things more complicated than needed.  There were not small, medium, and large for size.  But tall, grande, and viente.  Not just cream and sugar.  But skinny, soy, and I think some other things.  The baked goods seemed more straightforward.  I think I could have ordered myself something, if I could eat any of them.  Even if I drank coffee, I don't think I could order a cup of it.  Or maybe I could because I would have some sort of idea of what all of the choices mean.  I typical order water.  I like drinking tea at home.  Even with that, there are a couple of teas I like.  I'm not for all sorts of options.

As I was trying to figure out what the heck people were ordering (to kill the time, and in case I'm ever in need to go to one of these places and order something to be social.  Not a huge Chai Tea fan either.  I did see they had bottle water, and that is probably what I would get), I was listening to the workers talk.  There was the manager who looked to be in her late 20's to early 30's.  A woman being trained who looked to be in her 40's.  And two women in their early 20's.  The two younger women were out working the front several times by themselves during lulls and their conversation was enlightening interesting.  The one is about to turn 25, the other one "has a couple of years" before she turns 25.  The one whose birthday is approaching was talking about how she is having a mid life crisis because she is about to turn 25.  The other talked about fearing turning 25.  They talked about the manager who was "so mature" for her age so when she turned 25 "a while ago" it was not a big deal.  The manager had apparently "gone through some tough things".  This got me thinking about when I turned 25 and what I was doing.  It took some thinking to figure out what I was doing shortly before my 25th birthday and what I did the year I was 25.  My 25th birthday was nothing I pondered too deeply.  I had got engaged 2 weeks prior to it but it was not some major milestone.  I had no idea my world was going to come crashing in on me the day before my 26th birthday.  Essentially from after my honeymoon on, I had seen the writing on the wall that my life was entering a trying and defining time but I had not known what the bottom was going to be.  The day before my 26th birthday I knew what 1/2 of it was, 2 days after my birthday what I anticipated (correctly) to be rock bottom to be was confirmed.  I just didn't know when it was going to happen.  I didn't know that there were going to be 3 other significant deaths prior to in the intervening 10 months.  It was after this thought I started to listen to the ladies talk again.   There "midlife crisis" over turning 25 involved hard classes in school, and dating the same guy for more than a year.  Maybe getting their nose pierced.  I sighed.  How I wish those were my worries the year I was 25.  I then wished that their worries remain their largest worries for the year.  The next time one of them talked to me, she initially called me "Miss" then corrected herself to "Ma'am".  Typically I think of "ma'am" being someone older or military (when I was a commissioned officer's wife, this is how I was routinely addressed), almost something to be offended from being changed from a "miss" to a "ma'am".  Something old fashioned about it.  Then the thought flashed through my head, I guess in their eyes, in there culture where I couldn't even order a drink in a coordinated manner where what would cause a "midlife crisis" for me is so entirely different than theirs, I guess I am of an older generation despite less than a decade of difference in age.

The ironies of life

Last night, I was sitting in my living room.  And I just thought of how ironic the scene and situation was...

Obsidian was dressed up in his Halloween costume, Th*or complete with a hammer that is 1/2 the size of Obsidian.  My son who is/was 3 standard deviations below normal for growth has chosen to be the largest Superhero of them all.  This week I have been dealing with the problems of getting him the Incrlex that he has been on since early August.  He has started to grow since starting.  Problem being it looks like he will have to stop due to insurance and doctor issues.  His appeals have been exhausted.  I have not been impressed with his doctor's office.

I was writing a long email to Pyrope's kindergarten teacher.  Things have not been going well.  It was my second long email to her this week.  The level of communication I've had with the teacher is outside of cultural norms.  I don't want to be a 'problem' parent, but at the same time I feel to give Pyrope the best education, I need to do this.  I do like the teacher.  I like her a lot.  I hope that comes across.  The irony of that situation was I was talking on the phone with my sister.  My sister is a teacher.  She was calling me to ask advice and talk because a parent of one of her students was sending her multiple harassing text messages.  This was to the point my advice was to call the police.  The police's advice was that they are going to step up patrols around her and if it gets any worse for her to leave her city and stay with a relative for the weekend.  So here I am on a Friday night email my son's teacher (hopefully in an useful way) while talking to my sister who is dealing with a parent's communication that is a very negative situation.

So I just shook my head at life, and got the kids to bed.

Sweet revenge

Today I was changing Obsidian's diaper.  A couple months ago, he had no awareness or control.  Now he does, and he could be toilet trained.  Except for the fact he does not want to.  If you try to sit him on the potty, typically he will pee on your leg.  On purpose.  Punishing him for that is only limitedly useful as it has stopped the peeing on the leg, but he won't pee on the potty.  He will either grab a diaper and hold it in front of him and pee or simply wait until a new diaper is put on.

As I was changing his diaper, I asked if he wanted to go to the potty.  He hesitated and got a glint in his eye.  I was not sure what was coming next but I knew it wouldn't be an agreement to pee in or sit on the potty.  I thought of preemptively telling him to not make a smart alec remark.  It ran though my head how if I said that prior to any comment being made, I would then be my father.  Who so frequently when I was a child, and a teenager, and to be honest up until when he passed away when I was an adult, would just tell me "Don't be a smart alec" just prior to when I was going to make a "smart alec" remark.  At the same time, I was wondering what was about to come out of Obsidian's mouth.  My dad admitted when I was an adult, sometimes he would just let me go because he was curious to what I was going to say.  I decided I wanted to hear what he was about to say so I didn't cut him off.

"You take me to Grandpa's house and I will go potty there."  A glint in his eye.

"You mean Grandma's house?"  While my mom lives in the same house she did when my dad was alive, Obsidian doesn't think of it as "Grandpa's house".  Pyrope and Obsidian are familiar with stories of both of their grandpas, but never met either of them.

"No.  Grandpa.  You take me see Grandpa, I go pee potty."  Triumph in his eye as he marched away with his new diaper on.  Briefly looking over his shoulder as I was still sitting on the floor contemplating the comment.

So while the thoughts of my dad having to deal with my "smart" comments in the flash before I knew I was going to have deal with a "smart" comment coming from my child, I couldn't help but think that my dad was watching, laughing in his deep belly laugh, and commenting how revenge is sweet.  A child that takes after me.  For the most part, my dad got the brunt of my "smart" remarks.  It has already become clear, that Obsidian directs the majority of his "smart" remarks at me, not Jet.  Jet gets some, but not nearly as much as I do, even when you consider how much more time I spend with Obsidian.

God give me the grace and strength that he gave my dad to deal with me.  He knows I need it.  (Yes, my mother was involved, very involved, but she never quite knew how to react to things like this.  Plain flat out misbehavior she was fine with.  Me with my comments that I shouldn't have said but were really appropriate, not so much.  So that I always had to deal with my dad.  His reactions were always "reasonable" to me, my mom would react so wildly different that it was fairly rare that I would make such comments to her, even by the time I was 4 or 5).  The apple doesn't fall far from the tree.

New Year

From the time I was a child, I always associated late summer, as in the end of August or early September with being a "new year".  More so than January.  Even in the intervening years that I was not in school or working in a school, I still thought of it as that way.  Last year, with Pyrope starting preschool, I returned to that thought pattern in complete earnest.  This year with him being in kindergarten, the feeling is back full force.  And I've come to the conclusion, it most likely will remain so for the next 20 years or so.  At which point I'll be in my 50's, and all but 8 years or so will have been marked by the beginning of school.

This year I've really been thinking about stuff.  Material stuff.  Mainly the fact I have too much of it.  My kids have too much of it.  Less is better.  As I think about specific things, for the most part, I really come to the conclusion I don't need it.  And in many cases I really don't want it or think it makes my life happier or better in any manner.  Now to purge my belongings.  And my kids.  That will be the tougher part.

Relationships.  I've been spending a lot of time thinking about how I value them.  Which ones I want to work harder on.  Which ones I want to "maintain".  Which ones I want to spend less time on.  I've thought about the natural cycles where people and my relationship with them goes through.

My "professional" goals.  My monetarily compensated job makes me set new "professional" (i.e. it relations to my job) goals.  These are made each spring.  This year, it has been decided that we have to look at them semi-annual.  This took me by surprise as I was called into my boss' office.  I was then asked what I was specifically doing to reach my goal.  I've never been asked that either.  Um, nothing.  I was then told I have to do something to move towards my goal.  Which I will because it is part of my job.  But as I was thinking about this, I decided, I really don't care.  My "professional" goal(s) at this point is to go to work, fulfill my job description, go home, and get paid.  I don't care to advance.  I don't particularly care to do anything different than what I'm doing.  At this point of my life, I prefer to dedicate my time and energy to my "home" jobs.

This lead me to thinking about time, and how I spend it.  I've decided I need to spend less time on the computer doing pointless things.  I've decided I really don't understand people who spend a lot of time watching TV, or really even movies.  I can't tell you the last time I watched a TV show.  Other than sitting down and watching something with the boys, I can't even say the last movie I watched.  And I don't miss it.  I've decided I do need to spend more time doing cleaning/housework.  I've come to the realization I spend a lot of time, and I mean a lot doing schoolwork with Pyrope and physical to build strength, endurance, balance, and vestibular skills with Obsidian.  I've come to the conclusion that for the next number of years, these activities will be a major part of how I spend my time.  I think about how much time I spend on dealing with health care issues.  And that just makes me angry.  Not physically dealing with, learning about, developing treatments for the issues (mainly mine and Obsidian's, but also Pyrope), but with health insurance carriers, doctor's offices, billing departments, pharmacies, human resources, exc. for getting the services/medications that are needed and the correct billing to the correct payor for each item.  I see no end in sight for this use of my time.  I wish I had more time to read.  Overall, I've read more this year than I have since Pyrope was a baby, but I would still love to read more.  I don't particularly have a list of books that I want to read, but I just love to read and wish I did it more.

My temper.  As a child, it was very short.  I consciously worked on it.  Slowly over the past year, my temper has got out of check and I find myself yelling more.  Just being aware of how much I yell, and verbally show my frustration, and show it in other ways, I've decided I need to reign in.  I know that when I'm not flying off the handle as much, as a general rule, my stress levels go down as well.  I'm not one for really bottling up until things blow up, but I do best if I stop and think before I act or speak.  Particularly when I'm stressed, upset, or angry.

So here is to a new year.  I'm hoping for a good one.

Just everything

Somehow, 'everything' seems to be happening this summer.

Most of the things in isolation would cause me some stress but not knock me down.

However, I feel knocked down.  Or ready to be knocked down.  But I'm stubborn.  Very stubborn and I keep going.  As I've burst into tears a couple times in the last few week with "I don't want to do this anymore" as I'm talking with my best friend, I know that I will.  She knows that I will.  I just don't like it.

Pyrope has started kindergarten.  He is not particularly enjoying it.  His best friend is in his class, which he likes.  However, he has informed me on several occasions it is easier for him to learn when I teach him at home.  There is too much noise at school.  While I agree that I can teach him more academically at home, I saw a very significant decrease in his social and verbal skills since he has been out of school since May.  On top of this, he will neither live, go to school, or eventually work in a bubble.  He has to learn how to function in the "real world".  Academically, he can learn virtually nothing this year, and he will still "pass" kindergarten, as his reading and math skills test at least at a 1st grade level, in some areas a 2nd grade level.  So on we will go.  With lots of communication to the teacher.  I will continue to work on reading, writing, and math at home.  He will go to school, communicate with others, socialize, and try to learn how to learn while there.

Obsidian was taken off of growth hormone in July.  It wasn't working.  The blood tests proved it was not working.  His growth velocity had not changed.  There is a different hormone, IGF-1, he is now on.  Getting it approved of by the insurance is being a chore.  My main problem right now is with his doctor.  If I could switch doctors I would.  Problem being, I can't (practically).  The pharmaceutical company that makes it is supplying him (for up to 8 months) with the medication while we are trying to get it approved by insurance.  He has been on it for slightly less than 3 weeks.  By my measurements (and they have always been accurate in the past), he has grown more in the 3 weeks he has been on IGF-1 than the 6 months he was on GHT (2.6 cm vs 1.9).  I'm hoping I'm measuring correctly.   I'm hoping (and trying my best) to make sure he can continue on the drug.  At this point, I'm not really looking for answers for Obsidian and his medical issues, but just looking for the best treatments I can find.  If there is a way to increase his growth rate so he is a typical (or closer to it) height as an adult, it would be great.  If a way is not found, I just need to focus on teaching him how to function in a world that is made for adults that are above 5', when he will most likely be right around 4'.  I really hope this does give his body what he needs to grow to his genetic potential (which is most likely somewhere in the 5'8" to 5'11" range based on family history). 

My work is work.  My boss that I like has been moved to a different facility.  The one that I have never got along with is it.  She is a nice person, but somewhat lacking in managerial skills that would be beneficial to her job.

Jet's job has degraded to the point he updated his resume.  This is a large step for him.  Finding a job won't be an issue, he just doesn't like change.  So he drags his feet when it is time to change.  He really has not seriously began to look, apply, or interview.  Hopefully the day is coming sooner now.  I would have long been gone, for various reasons.

Jet and I have been arguing.  I really keep getting the feeling he doesn't see or get my point.  Sometimes I think he is trying to taunt me by his actions, but when I stop and really think, I don't feel he is purposely taunting me per se, he just doesn't get what my issue is.  No matter how I explain it, or try to have others help me explain it.  I'm tired of the argument.  I want some sort of resolution.  Even if it means a resolution that I don't particularly like or want.  I just don't like where we, or rather our relationship is.  Or the cycle we seem to be stuck in.  Jet doesn't appear to be nearly as bother by all of it.  That or he is just hoping it will go away, which is really the most likely scenario.

A couple of the positions I took on this spring in organizations are more than I anticipated.  Not horribly more.  Not more than I can handle.  Just more than I expected.  And I find it wearing.  I keep saying that soon that will calm down.  And it really should.

Not working

I've been measuring Obsidian as I always do.  Since he was a premie and he has inital jaundice issues, I've weighed and measured him regularly.

So I knew that his growth had not excellence in the 6 months he was on growth hormone.  It was the same for all intents and purposes.  Bloodwork needed to be done to make sure there was not significant improvements in his IGF-1 factor.  The doctor was supposed to call me with the results and to discuss the plan.  At the appointment he didn't want to go into detail because he didn't have all of the information yet (I had called to ask to do the bloodwork prior to the appointment as I knew he didn't grow as hoped, but doctor wanted his measurements to prove this prior to bloodwork).  I was told it could take up to a week after the bloodwork was drawn.

Lo and behold, 5 days after the bloodwork was drawn, I got a letter in the mail (mailman delievered our mail at 4:30 that day, doctor's office closes at 4.  Some days we get our mail by 8:30 am)..  Well, that is somewhat inaccurate.  I got a copy of the office visit note (which is standard for where we go).  Initially I was reading through it.  No new news.  Then I get to page 5 of 5.  The results of the new bloodwork are in.  Appearently I'm to immediately stop giving him GH, and as soon as insurance approves, he is to be on another medicine.  That is injected.  Twice a day.  Oh yes, his diagnosis to why he isn't growing is something different.

Being the information craving Mama Bear that I am I research the drug some.  There are some different details with this drug.  It must be given with food.  If not, Obsidian can become hypoglycemic.  In general, Obsidian can now become hypoglycemic (but the risk is particularly high if he doesn't have a full meal within 20 minutes of eating).  When I talk to the doctor the next day, he does not mention this.  I bring it up to him.  He said, oh yes, that could happen.  I'm sure my nurse will tell you about that.  She'll contact you in the next week.  But if you haven't heard from her in 2 weeks, call us.  Don't worry my friend.  I will be all over you case in less time than that.

I'm curious to how this is going to pan out with our insurance.  This is a relatively new drug, released in 2005.  It is not considered experimental, but at the same time, there is not a large body of evidence yet.  The large long term longitudinal studies do not exist.  Partly because of time.  Partly because it is rare.  It is an expensive drug.  As Obsidian is 3 and if it works he will have to take it until he has completed puberty, this will be a long term treatment.  It is an expensive drug.  All of these things combined, make me wonder if he will be approved.  Or if I will have to jump through hoops.  Or do battle.  Or if I will win the battle.

And I'm tired.  And sad.  I knew that the odds were not in his favor for growth hormone to work as well as it can in some people, but I had hope.  You have to have hope to enter in on something like that.  I have hope that this new drug will help.  I have fear that it won't.  I have a fear that we will not get the chance to find out if would work.  I have a fear we will find that it does work, switch insurance (which we do regularly, long story, I am not a fan of the US healthcare system as it is today) and they don't approve it.  I have a fear that I will have episodes of hypoglycemia to deal with.  I fear that Obsidian will have to deal and feel hypoglycemic.  I know how that feels, and it sucks.  I fear that there are negative long term risks, risks that we don't even know are risks.  By the time that data is in, it will be far to late for Obsidian.  So many people think it is the actual injection that is the "bad" part.  Honestly, I could care less.  I have no issue or fear of that.  Obsidian doesn't like shots, but it is not an ordeal.  It will become a part of life, as did the bedtime one did.  I'm not looking forward to it.  I dread even more having to every day have a full breakfast and dinner for him and making sure if he/we are out at those times I have the stuff packed and with him/us.  But is a dread like filling up my car with gas when it is 10 degrees below zero.  You live with it, you do it.

It is the other fears that keep me up.  But one foot in front of the other.  As my new keychain says:

God grant me 

the serenity to accept the things I cannot change

the strength to change the things I can

and the wisdom to know the difference