Messy

When Pyrope was little (say under the age of 2), I used to hang out with a mom and her daughter who was 2 months younger than Pyrope.  As the kids began to get older, our parenting styles didn't match as well and we started to drift apart.  There was no argument or hard feelings, just a natural drift.

This weekend, she posted on my Facebook wall about activities to do with her daughter.  I said something about Play-Doh.  She responded that it is too messy for her (the mom's) liking.  Huh?  I don't even really consider Play-Doh a messy activity.  I thought to myself that our drift apart was probably a good thing.  I'm guessing she would not want her kids playing with mine in the "garden" (read area of dirt they are allowed to play and do whatever in), or helping me cook (now that can be a very messy indoor activity), or painting.  A friend commented how she always has her kids wear play clothes to my house as she never knows what they will get into and in the same breath how much her kids love coming to my house.  I have a philosophy, I have a washing machine and a bath tub.  If the clothes can not survive the kids play, I probably should not own it (or at least not have them wear it for things other than special occasions).

Walking by Faith

One of my favorite hymns in church has been "We Walk by Faith"

We walk by faith, and not by sight;
no gracious words we hear from him
who spoke as none e'er spoke;
but we believe him near.

We may not touch his hands and side,
nor follow where he trod;
but in his promise we rejoice;
and cry, "My Lord and God!"

Help then, O Lord, our unbelief;
and may our faith abound,
to call on you when you are near,
and seek where you are found:

that, when our life of faith is done,
in realms of clearer light
we may behold you as you are,
with full and endless sight.

Words: Henry Alford (1810-1871), alt

Music: St. Botolph 

While I mainly think about it with my spiritual life, but at some points, I feel that I need to apply it to all aspects, or rather a specific aspect at that point.

Obsidian seems to go through "series" of medical appointments, then there will be a lull.  He just finished, for the most part, the series again.  Genetics, endocrinology, second opinion endocrinology, neurology, and school system assessment.  Neurology is recommending a second opinion for genetics and he has to go through a full assessment by the schools, but other than that he is done until the middle of the summer.  His MRI and all of his bloodwork is normal (minus the IGF-1 but even that it is ONLY that is perplexing).  Which is good, but does not offer a reason to why.  Or lead us to what we should do.

The bottom line of all of the appointments is: no one is sure why he is so small, has his gross motor delays, or his other "issues" are there.  For the most part, everyone agrees that is all related.  Somehow.  But no one knows how.  All feel it is most likely genetically based.  Growth hormone therapy might or might not help him grow more.  Depending on who you ask, the odds are not even 50/50 that it will help.

Nothing that was discussed was news or surprising.  Well, apart from some idiot screener for the school system that said Obsidian had no delays including gross motor which is just idiotic (I can not accept this and demand a full evaluation, which is the plan).  I'll not further digress.

As I think about the search for the cause of Obsidian's problems, I think there needs to be a point that we stop so actively searching.  At some point, we need to start "walking by faith", moving forward without true understanding.  With the knowledge, and hopefully acceptance, that we might not ever understand during this life the reasons.  I'm getting very close to that point.  We have consulted or go to experts in many fields, specialist that are known worldwide for their knowledge.  It is not that we can't revisit it when medical knowledge has advanced more.  But I'm coming more and more to the conclusion, with current medical knowledge, there is no "answer" to the underlying reason of Obsidian's medical issues.  While the lyrics don't exactly point to the issue, the general idea or point is what I think I need to be listening to.  I will continue to walk, but accept I might not understand, that understanding as I would like it might not be in my immediate future.

Thankful Thursday

• Turbo Tax.  It makes doing taxes so much easier.  (Yes, I know there are free online ways of doing it, but I'm a creature of habit for some things)
• The majority of this round of Obsidian's doctors appointments are done.  One last second opinion, and then it won't start again until this summer.
• Obsidian's had an easy adjustment to GH injections.  He whimpers while it is happening, but it doesn't start before and as soon as the needle is out, he is zipping his jammies up and running off.
• How pretty the world is after an ice storm.  It is the only redeeming quality.  Sometimes it is so beautiful it almost makes the storm worth it.  Almost.
• In 1-2 weeks, recycling should get easier.  Our city will now take cardboard, I won't have to sort the types of recyclables, and I can just toss them in a big bin instead of putting them in clear blue bags.
• The perks of both Jet and I having a common employer (one of them). And sometimes being in the same building, but different employers on the days we are in the same building.  How is that for confusing?  If we are working on the same day in the same building, we are working for different employers, but we do both work for the same employer (but then each have a different job that is for different employers)
• Jet and I both having some level of flexibility in our jobs that one of us can come in later than the other or leave earlier to match the schedule of the kids, and we can even change what we are doing part way through the day.
• That we had a breath of spring.  It was refreshing while it briefly lasted.

Wordless Wednesday

Just do your job

The past two weekends at work I've come up with a new motto for work.  It is simple.

Just do your job.

That is it.  I don't care to get Facebook messages from an ill co-worker who as home and thinking about how I do my job.  Your not my supervisor and I'm not at work.  Do your job, let me do mine.  If you really have the dying need to comment about the subject, please do it in an appropriate manner.  At work.  I know co-workers might have a lot going on in their personal lives.  But if you are going to be two hours late to work, a phone call saying you will be late would be nice.  I would consider this part of your job.  If you are at work and are told something needs to be done.  Just do it.  I don't really care that someone else "should" be there and doing this particular task already, they aren't and it needs to be done.  Complaining is not going to help, just do your job (because it is really part of your job as well).  And I really don't want to hear about the personal disagreements between co-workers slowing me down from doing my job.  And I really don't like a phone call from my supervisor the next afternoon that lasts for 30 minutes telling me that I did the right thing and if it were to happen again I should do the same thing.  Yeah, thanks.  I really have no interest in you telling me that for 30 minutes, particularly when I'm at home trying to listen to Pyrope talk about his day at school, cook dinner, and make sure Obsidian doesn't get into anything he should be because I'm focusing too much on the phone conversation, Pyrope, and dinner.  Nor do I care to get a phone call at 8 am the next day from a co-worker telling me that my supervisor might be calling me to go over once again what happened on the weekend.  Do NOT care.  If you are sick, then take time off and go home.  I don't care if you want to use your PTO for vacation not sick time.  If you are well enough to be at work, do your job, and all of it.  Don't do part of it, then leave the part you had the time and could have done, but just didn't feel like doing for me to do.  And if you do leave it for me to do, please be clear about what I need to do, so I don't have to waste my time to figure out what parts of your job you didn't do, so I can complete them.  All of this boils down to:

Just do your job.

Thanks.  It makes mine a lot easier.

Note: I really do understand that my department is going through a huge period of change and this is stressing out many people.  But it would be so much nicer for everyone if everyone just attempted to do their own jobs!  Just saying.

New tools

A month after Face.book allowed people with non-college email addresses to join, I joined.  I did this mainly because my sister was on it, and it was the easiest way to be in contact with her.  There was no one my age on it.  The feel of it was very different.  Very young.  As it has gone "mainstream", I've watched it evolve.  When there is a new series of changes, I somewhat chuckle at the posts that rail against the "new Face.book" that want the "old" one back (when the reality of it the "old" FB was "new" in a rememberable past).  Some of the changes work, some don't.  I've watched it go from an amusing way to interacting with my sister and a handful of other people that I knew that were in college and on it, to a major way I get everything from news to communicating with the majority of people I know from many aspects of my life.  I have "friends" that were friends from childhood, high school, college, different points of my work life, and family.  I have purposely never mixed current work with FB.  I might make an occasionally comment that if you know me well enough, you know I'm referring to work, but I never directly comment.  I don't have my employer listed.  I don't write messages to co-workers about work issues.  I use my work email for that.  I'm amazed at how I look at FB and Twitt.er has effected the world around me.  I look at how they are used overseas, in particular, but here as well to organize movements in a way that was previously impossible to do.

Recently, I got a message on FB the contents basically said that a co-worker was home sick and she was thinking about how I document at work and told me that I should do it a different way.  I was annoyed on many sides.  I decided to keep my "do not mix work onto FB" rule, and ignored it altogether.  But it got me thinking about the appropriate and inappropriate use of social media.  I know a couple people personally that have been fired over things they have done in social media that was mixing work with the media.  I know a countless number of people that have been reprimanded of how they have used social media and how it ties in with work.

I have also got to thinking about the etiquette that social media requires.  Jet has recently got his own account, and finds it confusing at times.  He doesn't pick up on social rules easily, and he finds it all mind boggling at times.

I ask myself what are the "rules" and how did I or others learn them?  Do the rules change in the light of particular situations?  How are these new tools going to continue to evolve and effect my life?  What role is going to play in my kids lives?

I guess it is something that I will just continue to watch, participate, and learn as it continues to grow and mature.

Thankful Thursday

• We got a small taste of spring this week.  Last week, the high was around 15 F if it was a warm day.  Yesterday it was 51 F.
• The school psychologist who comes to Pyrope's class a couple times a month said he had a really good day when she saw him this week.
• Wii fitness games.  Getting to the rec center as much as I need to doesn't happen.  I get bored with DVDs.  I will do Wii fitness games (I have a couple of different ones), the competitive nature helps me along (even if it is just against myself).
• That I'm pretty much a person that can roll with the punches.  It takes quite a bit to really get me frazzled.  This was particularly useful this week at work
• Finding a couple of books that I have really enjoyed.  It makes me want a No.ok or Kin.dle or something.  Our library still doesn't have a huge selection of eBooks, and I really am not a "buy books" kind of person, definitely a library gal.
• Copies medical records of Obsidian's made it from where they are to where they needed to go.  One on the first try, one on just the second (which is really amazing that that particular one only took 2 requests)
• That beef slow cooked with dill pickles really does come out good (I discarded the pickles, cut up the roast, put barbecue sauce on it, stuck it back in the cooker, then it made some mean sandwiches).  Particularly grateful it turned out well because I did it for the first time on a night we had guests over for dinner (I figure, there is always pizza if it was a colossal fail, but everyone liked it)
• Spell check.  I'm a horrible speller, and if I didn't have it, my writing would not be nearly what it is.  First off I would purposely use smaller words versus the ones I really want to use.  Second, I would still have lots of spelling mistakes.

Wordless Wednesday

Wishing

 In May 2009, I flew to southern Florida by myself with the boys.  I rented a car (which turned into being a minivan), and took my kids to see my dad's best friend from childhood and his wife (who is my godmother).  Jet joined us later on when we drove up to see his family.  These are not people I know well, mainly because we live over 1,000 miles away.  My dad's best friend had cancer.  I wanted for him and my godmother to have a chance to see my boys, or rather my dad's grandsons.

In the two days we visited, most of their grandchildren came over, 5 of their grandsons to be specific.  Some of them are older (tweens and early teens) and two were exactly my boys age.  At one point, the adults were sitting on the deck, and all of the kids were playing in the pool.  They were having a grand time.  I missed my dad sharply at that point, as I know how much it would have meant to him to see it.  And I silently raged that they didn't have the health to be in the pool with the boys, for at least part of the time.  Even at that point, my dad's best friend didn't have the energy to do much, and what he did was spent interacting and doing what he could with the grandchildren.  Much as my dad's decline was spent.  I was also grateful that I decided to make the trip.  It was needed.  My godmother asked me in quiet moments how my mom was adjusting to be a widow.  There was more to than concern for my mom.  Almost trying to glean a glimpse into her future.

On Saturday, he passed away.  I didn't find out until late Sunday night.  It deeply saddened me.  Much more so than some else that I causally know would cause.  He passed away at home quietly and peacefully, surrounded by his family.  Very similar to how my dad passed.

I had been thinking of going back, for another visit.  Initially I thought I was too late.  But maybe I'm not really.  As my godmother and I and the other adults that would be around would be able to remember, and watch.

Sleeping

This past November, it has been 5 years since I slept through the night.  While I'm pregnant, my doctors don't like when I go more than 5 hours without eating, preferable 4.  Neither Pyrope or Obsidian is great at sleeping through the night.  I don't think Pyrope has done it yet.  Obsidian does sometimes, but not lately.  I would love to sleep through the night, but I don't think I could at this point even given the opportunity.  I would love to try.  Some mornings, I remind myself how short this season will be in my life.  This morning, it doesn't feel so short.

Thankful Thursday

• The improvements we've seen in Obsidian.  His energy is improving, it is much closer to other kids his age.  It isn't there yet, but it is closer.  And he jumped for the first time this week.  He has desperately wanted to be able to jump for 9 months.  He has tried daily.  And this week he did it.
• For supportive co-workers.  We were behind the 8 ball this weekend, and everyone worked together (as we should), and things worked out well.  Or as well as possible.
• Finding a good gluten free bread.  And the tasty grilled cheese sandwiches I made with it.
• For being covered in smooches.  Sometimes for no reason that I can figure out.  Maybe there is a reason, maybe not.  I'll take them.
• Thick, warm, dry socks.
• Steamy hot showers.
• Going shopping alone.

Wordless Wednesday

College Chauffeur

This past Saturday, I picked up my youngest brother from college and drove him home so he could go to my nephew's 1st birthday/our other brother's 30th birthday party (which incidentally he didn't make it to because he was busy digging our other brother out of a snow drift).  On Sunday, I returned him to his dorm.  It is more or less an hour an a half trip each direction.  Saturday was significantly longer due to crappy driving conditions thanks to a snow storm that just happened (as in it was supposed to be a clear sunny day, um no, I couldn't see the road for a while, I was just driving in the tracks of people who went before me, praying that whoever was in front of me had their headlights on because there was no way I was going to see them if they didn't).  It made for a bit of a crazy weekend because I worked a half day as well both Saturday and Sunday.  And went to said birthday party after work on Saturday.  And was invited, but just sent my men folk, to a Super Bowl party on Sunday.  But I didn't mind.  For the most part, I don't mind being the college chauffeur.  The exception is if I have one of my boys with me and they are not in the mood to travel.  This weekend, my mom or Jet watched the boys as I drove.  I was chauffeur for my sister as well until she got her own car.  My mom doesn't like driving, particularly highway driving.  And if she is alone in the car, even more so.  My dad passed away 2 months before my sister went to college.  He was my college chauffeur. 

There are several reasons I don't mind.  First being, I don't mind having the time to think.  Sometimes I'll listen to a book, sometimes to NPR, sometimes to music, but often times I don't listen to anything at all.  I like the quiet.  Then there is the leg of each trip I have my sibling with me.  Sometimes they sleep.  Sometimes we listen to music of their choosing (I'd much rather listen to my sister's than my brother's music).  And sometimes they talk.  And talk.  And talk.  I find out more about their life while I'm driving than at just about any other time.  For the first time on Sunday, I got to thinking about my dad, and what he felt about driving.  I never asked what he thought about it.  But as I thought about what I did on those trips with just the two of us, it was much the same.  Sometimes there was my music, sometimes I slept, and sometimes I talked to him in far more detail and substance than I typically did during that period of my life.  I'm suspicious that he too might not have minded those trips to pick me up.  At the time, I thought he did it more because my mom was so vocal about how she hated and didn't want to do the trips.  I wonder if my sister and brother will ever realize that I didn't and don't mind the trips.  That in someways I even relish them.  I have said that I don't mind driving them, that I look forward to the time I have in peace.  I left out how I look forward to the times they choose to talk, as I think that would have made my 18 year old brother not talk.  Or at least it sure would have made me if my dad had told me that.  I imagine, and hope, with time, they will realize that I truly do not mind.  That I'm not "just saying that", because at this point, I think that is what they feel.  Understandably, as my mother still is adamant and vocal about how much she hates doing it, and how hard it is for whoever (read me) that does it (I think my other brother gave 1 or 2 rides, my mother maybe 3 times).

Love isn't always said with didactic words.  Or shown with hugs or kisses.  But with rides, and listening to other's music, in being silent, and with listening.

Peer Lessons

So far, GHT has given Obsidian more energy.  He naps less and he plays longer without resting.  This is a good thing but it is causing some issues.  Lessons that Pyrope learned gradually, Obsidian has not.  And now they must be learned.

I have always been very conscientious about socializing my kids.  I have purposely, regularly put them in various situations.  Where they are mainly with adults my age, where they are with adults my mom's age, where they are with "older" adults, where they are with grade school kids, kids their own age, and kids younger than they are.  Each of these situations there are different social rules that need to be followed.  The interactions are different.  In many ways, both of my kids have had the most difficulty learning how to appropriately play with children their own age.  With older people, you listen to what they say.  With kids younger, you can boss them around some, but you have to be gentle and let the "baby" get away with things that they themselves know they can not.  The interaction with peers is complicated.  In controlled situations (such as classes where you sit and wait your turn and do as the group does) are not that difficult either.  It is the one on one, small groups, and larger groups of peers  that are difficult, particularly when there are not adults/older kids interacting with the kids.  These type of situations are also the most difficult for me to consistently orchestrate.  But I have.

One place that I have found is "Preschool Gym".  Two times a week, a rec center has an "open gym" for kids under the age of 5.  There are mats, tumbleforms to climb over, balls, scooter boards, and parachutes laying in the room.  There is no formal "lead activities".  Kids are just left to play.  Sometimes parents are playing with the kids.  Sometimes the kids are just playing with the adults standing around the edges making sure that no one gets hurt.  Typically there are kids around my kids ages.  Disagreements regularly break out over who has what, how to play whatever they are doing, whose turn it is, exc.  The culture at this particular place is to let the kids try to work the minor stuff out on their own (which is a breath of fresh air for me).  At this point, Pyrope runs around with the "older" kids and they need very little intervention.  They talk things out, apologize to each other for accidents, and in general do their own thing.  Kids Obsidian's age, not so much.  There is many tears, along with yelling, kicking, punching, exc.  Up until this week, if Obsidian had an issue, he would cry, walk over to me, then have me hold him or literally sit on my feet for the remainder of the gym time.  Typically, he would only play the first 20 minutes or so, and the rest of the hour to 2 hours, he would be in my arms or only very briefly play with me with a lot of encouragement.  Not so anymore.  He played the whole hour we were there.  However, this lead him to standing and crying and yelling in the middle of the gym multiple times (and several times he would have hit another child had I not grabbed his arm first) when there was a disagreement.  Turn taking was infinitely hard.  It was hard for Pyrope, but he had some practice and experience at this point.  Obsidian, if he didn't get what he wanted right then, he just stopped playing altogether, and for the most part didn't rejoin in.  I wonder if time is just dulling my memory at how many times at this point I had to redirect Pyrope to play with something else while waiting for his turn, or asking to play together, or some other appropriate way to deal with the situation at Obsidian's age.  Gym time was trying.  I felt like I had this huge brat on my hands.  It only makes my resolve to keep going, if not try to go more so I can keep trying to teach Obsidian appropriate ways to interact with peers.  Because of his size, many times peers even without prompting of adults, give Obsidian his way because he is seen as a "baby".  Obsidian is used to this.  And likes this.  Before he tired so quickly, other kids didn't care, as he quickly stopped.  Not so much any more.

I'm glad he is starting to have these issues now, not when he is kindergarten.  But still, I'm not enjoying the amount of time I'm having to instruct him on acceptable behavior.

Before I had kids, I always said I was fine with having a child with a disability but I was not fine with having a disabled brat.  If anything, I would want a child of mine with a disability to have better manners.  As a student, I worked with a guy who said the most important skill we can teach a person with a disability is something that makes them lovable, more so than feeding themselves, dressing themselves, toileting, or anything else.  That if they were loved by their caregivers/peers/people around them in general, that those people would be much more attentive and willing to help, even if they needed to do more, if the person was "lovable" or had something that attracted them.  At first I didn't get it, but I thought about it.  And I looked at others.  And I thought some more.  Over a period of years, I decided there was a basic truth to this.  And that anyone, with a disability or not, is more likely to get helped by others if they are liked.  As I was thinking about how I could pass this on to my children, the two things I came up with were teaching them "good manners" and empathy.  These are not easy skills to teach, and mainly need to be taught through example and expectation.  Which goes back to my efforts in socializing.  And why I'll be at "Preschool Gym" as often as I possibly can in the near future.

Cabin Fever

I'm not a person who minds the snow.  I'll go play in snow.  I even like it when it is so cold the snow squeaks.  However I don't do ice.  And everything is covered in a thick layer of ice.  The boys are driving me nuts.  They are just about literally climbing the walls.

Rec center here we come.

Thankful Thursday

• Obsidian is not having that terrible of a time adjusting to daily shots.  He cries, tells me no, and tries to get away when he sees me with it, but as soon as it is done, he resumes whatever he was doing as if nothing happened.
• That the process from when it was decided Obsidian would start GHT to when it first started was short (16 days)
• Obsidian seems to have more energy since starting GHT.  He has a black eye to prove it.
• Playaway books from the library.  You just plug in your headphones and start the book.  The device is thicker but short than an iP0d Nano.
• Tween boy family members that love playing with my boys
• Rich hot chocolate laced with Baily's Irish Creme
• Slow cookers and the fact if you throw all of the ingredients of stuffed green peppers in it (including rice that is uncooked and the proper amount of water), that it comes out tasting the same (but just not as visually appealing) with a fraction of the work
• Pyrope's advances he has made in speech as well as some of the concepts he has really started to "get" recently
• The "forced" date nights Jet and I have, we buy season tickets for a series of plays.  Then we "have" to go.  Most are good.  A few are excellent.  Twice we have left at intermission.  Once we didn't make it to intermission.  Not bad for this being our 5th season.  So far this year, we haven't even left at intermission.
• The number of sitters we can call on when we do go on date night
• How healthy my kids are.  They get normal colds and virus', but knock on wood, are really very healthy and don't need any interventions apart from home remedies.

Wordless Wednesday

So it begins

Sunday night Jet was talking to his mom.  In the past week, several of her teeth have crumbled.  I'm afraid this is the beginning of a long series of medical complications.  I pray I'm wrong, that this is isolated.  And unrelated.