Touch-points

This time of year, many people look back over the past year or decade and reflect what has happened.  I have never been much for celebrating New Year's or making resolutions.  There are touch-points I do have a tendency to reflect on my past and make resolutions for changes or to just do things in my future.  

There are certain touch-points I have created for myself.  Days that I have thought about what my exact circumstances would be when I reached them.  Some are concrete dates and others are achievements.  My 16th birthday, graduation from college, buying my first home, the day my youngest sibling was the age I was when he was born, my wedding day, the day I had my first child, the day my youngest child moves out of my house,...  When I was diagnosed with diabetes, for whatever reason I created two touch-points in my head.  The first was when I had lived with diabetes longer than I had lived without it and the other was when I had lived with diabetes for 50 years.  Today is the day I have officially lived with diabetes longer than I have not (which isn't entirely true as I had obviously had diabetes for a while before I was diagnosed, but if you count when I've known that I have diabetes, today is the day). 

Some of my reflections are just changed that I have seen with diabetes care itself

• Glucose monitors are much improved.  My old Lifescan One Touch II meter seems archaic.  It was relatively huge.  It took 45 seconds and a much larger amount of blood.  It only came in one color, gray.  It was high tech for the time, a feature that allowed you to download it to your computer just came out and had a fairly large memory of how many readings it stored.  The cable was a  9 pt. pin cord.  The program was cumbersome.   Now I mainly use a One Touch UltraMini.  It is small.  It takes a small amount of blood.  It takes 5 seconds.  I have ones in pink, green, and blue.  It doesn't have downloading capability but I don't really want it to.  If I wanted a meter that could do that, I could easily have one.  When I'm really looking at what my blood glucose is doing, I hook up my DexCom SevenPlus (which is several improvements from the DexCom STS, and the MiniMed CGM that only my doctor could see my reading after I brought it back) continuous monitor for however long that sensor is going to work.  I get a new reading every 3 minutes (well, when it isn't having issues).
• I have gone from using as many other were at the time 2 injections a day of R and NPH.  I have used a number of different insulins (Humalog, Novalog, Ultralente (which isn't even made anymore), Lantus, and now Apidra).  I switched to multiplw daily injections then to a pump.  I'm looking at getting my 5th model of pump and nearly 12 years of using pumps.  Syringes have gotten shorter and thinner.  The number of types of infusion sets has increased many fold.
• The DCCT has announced its results and then some follow up studies.  Papers have been written on the DPT-1.
• ACE inhibitors have come on the scene.  Hopefully kidneys will be saved.

Yet, there s no cure.  Type 1 diabetes still kills.  It still steals qality of life.

I've lost an uncle to "dead in the bed" syndrome due to type 1 diabetes.  I've watched another uncle lose more and more physical health to complications of type 1.  I've watched 2 first cousins be diagnosed.  I've watched friends suffer the negative consequences.  I've made friends, some lifelong, because of the common thread of type 1.  I've listened to family, friends, acquaintences, doctors, co-workers, and others blame a person for their medical problems because they have type1.  Humans are not made to be beta cells.  The general lack of understanding of how much is involved in manging or rather living with typ 1 diabetes involves.  That type 1 diabetes is a different disease than type 2.

It is tiring.  Day afater day.  Knowing there will be no day off.  No vacation.  Ever.  The time it takes to "manage", the feeling of crap that happens with glucose swings.  That happen daily, multiple times.

Yesterday and the day before, I spent at the wake and funeral of my aunt.  She passed away unexpectedly.  She was 54.  She was 3 days short of her 33rd wedding annerversary.  She has 2 grandchildren and another on the way.  She is missed.  One minute she was tired but walking to the dinner table, 30 minutes later was was gone.  Life is precious, unpredictable, and short.

I wanted to get something to mark the day.  Something specieal for myself.  I have wanted a SLR camera since high school.  So I have saved, worked extra, and watched for sales.  And I got one.  Something to mark the day, the accomplishement.  I have survived.  I have won some battles, I have lost some.  So far, I'm winning the war.  I'm still fighting which is one of the most important points.  I now have my camera.  Later today a friend and I will go out for a drink or two.  And I will keep going.

3, not 1

2010 has not been a kind year to my mother-in-law health wise.  And the worst blow was just given.  Over the course of the year, it was found that she has 3, not 1, types of cancer.  Theoretically unrelated.  There have been 3 surgeries and 2 "procedures" this year.  Up until Tuesday, she was told all of the cancers were stage 1 and that no chemo or radiation would be needed.  At her follow up appointment from her most recent surgery that was a couple of weeks ago, she was told that this last cancer is a stage 3.  She was told that she needs chemo and hormone replacement therapy.  If she does those things, then her 3 year survival rate is 50% and her 5 year survival rate is 40%.  At this point she thinks she is going to do the chemo.

She wants to stay in her hometown for this.  She lives alone and gets very little support from my sister-in-law, her daughter.  Jet has gone up there after each surgery to care for her until she has been ready to care for herself.   We have invited her down to stay with us while she is having treatments.  We will ask again.  Jet, and my, worries are mainly concerned with how she is going to be able to make it through the chemo treatments on her own.  Having my MIL live with us would drive me crazy.  Knowing she is alone and watching Jet worry about her being alone will be worse.  Never knowing when Jet will have to leave and go take care of her will be tiring.  All of his vacation time this past year was spent taking care of her while the boys and I remained here in our home.  It is looking like next year will bring more of the same.

At this point, the main thing I can do is pray.  And remind myself

God grant me the serenity to accept the things I can not change,
The courage to change the things I can,
And the wisdom to know the difference.

This funny thing

I had a realization a couple of days ago.  About my diet and weight loss.

Things were going well.  Slow, but consistent.  Then I started coming up with excuses.  The predictable happened.  I stopped losing weight.  On the positive side, I didn't gain any back, but my slow loss stopped.  Imagine that.

I do want to get to my goal weight.  So that means one thing.  I need to start paying attention again.  I've also decided that I need to start running/working out on a regular basis.  I did really well until I did my triathlon.  Then I stopped.  I don't have a whole lot of desire to do another.  However, I know signing up for races does get me to work out regularly (there is an interesting series they do in the fall for 4 weeks... every Wednesday you have a 3-6 mile trail run on a different trail, the location/trail is only announced to you the night before the run... if you complete all 4 you get a t-shirt).  That and while I was waiting for the race to start, a lady stopped me and said that she had an insulin pump too and wondered how I could do the race and that she had thought about it, and her sister had encouraged her to try.  I told her to go for it.  That I was planning on finishing the race like everyone else.  One stroke at a time, one pedal at a time, and one step at a time.

This week is not err, the best, week to get back to my diet.  Thanksgiving, food prep for Thanksgiving.  But after that the excuse would be Christmas.  So tomorrow it is.

I just can't....

Obsidian had a bad day at swimming lessons.  He had a cold and a kid pushed him (nothing out of your normal preschool push, but it scared Obsidian which is understandable as they were sitting at the edge of a pool and the kid was literally 2 ti mes his size).  So Obsidian cried and in general was uncooperative.  This got him kicked out of lessons.  There are no other options for appropriate lessons for him.  He has to either be with the babies (rarely is there a kid over 18 months and none of them swim at the level he does, and I have to be in the water with him.  We go swimming together and frankly I do more with him than they do in the baby class so it is pointless.  The next class up is the one he just got kicked out of).  Swimming lessons are good for Obsidian.  Really good.  In the 6 lessons he had in the previous session, he made amazing progress.  Good progress for any kid, but amazing when you consider him and his typical progress for anything physical.  And it was carrying over to things he did on the land.  (Don't get me going about how he could do well for one session then get kicked out the next because of one bad day, the first lesson he did well.  Everyone said he did well.)  I was told he won't be welcome back until he is closer in size to other kids that take the class.  For Obsidian, this might not be until he is 5 or 6 (as he has grown recently, he is now the size of an average 13 month old, but seeing he is 28 months old, it will be a long time before he is the size of the other kids, most of the time the youngest kids in the class are around 4).  I was, and am, frustrated.  And tired.  And just want to give up.  I cried.  I let myself have a bad day.  Then I Face.booked someone I know about doing private swim lessons with Obsidian.  I've known her since she was 5.  I taught her how to ride a bike.  I taught her swimming lessons.  I baby sat her and her brother and sister.  She has now been teaching swimming lessons for 10 years (which vaguely makes me feel old that she has taught lessons for so long).  Her current work and school schedules are changing, but after that she will start with him.  My preference would be that Obsidian would be with other kids when he is learning how to swim, but since that is not possible, having him in swimming lessons period is what needs to be done.  So within 24 hours, I had an acceptable solution. 

But, I'm tired.  I don't want to deal with this.  Now or ever.  Yet I know, there will be many more problems that will arise for Obsidian.  That I will have to fight for.  And for Pyrope.  That I will have to fight for.  And I'm tired.  And I don't want to.  But I have to. 

After I was diagnosed with diabetes, I had people tell "I could never handle it.  I just couldn't give myself an injection.  I would die."  My response has always been.  "You could if you needed to."  After it became obvious that Pyrope is not developing typical and then when Obsidian had his more obvious issues the comments started with them.  "I could never have a child with special needs.  I just couldn't do it."  You could.  I didn't choose any of these situations.  I wouldn't choose them for myself and particularly for my kids, but it is what it is.

A friend from childhood was one of the most adequate people that she "could never give herself a shot".  After a series of miscarriages, she found out that she needed to take shots to give herself a chance to carry a baby to term.  During her first successful pregnancy, her husband gave her the shots.  The "I could never give myself a shot" continued, if not increased.  The next pregnancy, her husband giving the shots was the plan.  However, the day the first shot was needed, he froze.  He couldn't do it.  Several hours of talking, tears, and arguing later, he still wouldn't do it.  My friend had a moment of light that if she didn't just give herself the shot, that her child would not live.  And she gave herself the shot.  Her husband never gave her another shot.  She called me shortly after the incident and told me I was right.  She could give herself a shot.  She had to, so she did.

So as I spent Saturday wanting to quit, to not have a child with different/special issues from your typical kid, I thought about what that would entail.  My children wouldn't be any different.  They would still have their issues.  I could just "give up" and not find a different way for Obsidian to have swimming lessons.  I could just let Pyrope not get speech services or go to school in a typical kindergarten without needed supports to make him safe.  However, they would not have the best chance to excel at life and school if I did this.  I could choose to ignore my diabetes.  But I wouldn't have the best health that is possible.

So I just can't quit.  I want to.  But I can't.  At least not today.

Guilty pleasures

Shortly after my mother-in-law was diagnosis with her first type of cancer early this spring, I started playing Farm.ville.  In many ways, I didn't (and don't) feel like have much control of things.  Of Obsidian's medical issues.  Of Pyrope's difficulty with language or cognition or whatever his issue is.  Of Jet and I arguing over 2 vs 3 children.  I needed a mindless, simple game that I could consistently control.  Throughout the spring, summer, and fall I have continued playing.  There is something satisfying about seeing things progress in an orderly predictable manner.  With the different diagnosis happening, different issues with various people, I can log onto my farm, and everything will work by the rules.  Even if something does not go how I want it, I know it is going to happen because of the rules.  The rules don't change.  So most evenings, you can find me unwinding on my farm.  It gives me pleasure to see how many things I've accomplished and how my farm looks.  If I want to change the look, I delete, rearrange, and buy new things.  At the same time, I feel guilty about "wasting" my time doing this.  I then rationalize the time I spend on my farm by saying I don't watch TV and I haven't been spending time on any of my other hobbies (most of which because I can't tolerate the frustration that they sometimes bring).  So I will continue farming.  I will escape to a place where the rules are black and white, and I can visually get immediate results of my work.

Swimming lessons

Swimming lessons have been part of my life for as long as I can remember.  My dad was not allowed to swim until he was in high school.  He learned how to swim at that point but he never could do it well.  My mom learned to swim at a young age and grew up with a pool in her backyard.  Her mother never learned how to swim and was very fearful of water (she did learn how to put her face in, and as a way for her kids to be able to take swimming lessons, my grandmother taught swimming lessons for years... however she only taught the lowest level where the goal was to be comfortable putting your face in the water... my grandmother had the reputation of being the best teacher for that level because of her patience.  When the kids she taught found out years later that she couldn't swim and was in fact afraid of doing the very thing she taught so well, they were universally amazed).  As a consequence of my dad and my maternal grandmother, I was enrolled in swimming lessons from the time I turned 1 year old until I could pass a certain level.  I kept up with swimming lessons even after that point.  By the time I was 13, I was teaching (at first it was just the babies 1:1, by 14 I had normal "level" classes).  I taught various swim classes from that point until shortly after graduating from college.

When Pyrope was a baby, we started doing Parent and Tot classes (for the most part the classes that used to exist for babies without a parent are now gone).  When he was 3, he was moved up to "Preschool" classes (no parents go in for these).  Obsidian was following the same pattern.  This fall when I went to sign up Pyrope for his preschool class, I noticed there was no longer an age requirement.  So I asked about signing up Obsidian for the same class.  I was told it was fine if he was comfortable in the water with a stranger and could wait his turn.  He can do both (he can't do 30 minutes of lessons because he gets too cold, but that is a problem we have with the parent and tot one as well).  He got signed up.  I was sad on the first day of class the normal teacher was not there.  The substitute was okay, but didn't really push Pyrope (or Obsidian but he needs less pushing and I'm less concerned about him learning the skills as quickly).  Obsidian did fine.  He waited his turn, he got in the pool, he tried, and he didn't cry.  A 5 year in the class was fearful but listened, tried, and didn't cry.  One of the 3 year olds refused (for the whole 8 weeks) to get in the water at all.  The other 3 year old kept running around the deck instead of sitting and waiting his turn.  The 2nd week, same thing.  Week 3, the normal teacher was back, took 1 look at Obsidian and said he couldn't be in the class because he was too small and wouldn't listen.  I said he had been fine the first 2 lessons.  She said no and refused to let him come with her.  With that, substitute teacher walked in and said the center had asked her to come in for the lessons so the class could be split (typically they limit the class to 4, and there were 5).  She took the 3 year old who wouldn't go near the water and Obsidian.  She was wonderful with Obsidian.  He learned so much.  Everyone from me, to his doctor, to his physical therapist started to notice him make significant gains (it could be coincidence, but I think it was related to what he was learning to do in the water).  At the end of the session, main teacher said that next session Obsidian would have to be in the Parent and Tot class (the class requirements once again have age included).  Are you kidding me?  No.  Parent and Tot they walk around in the water, sign song, and if the class is "good" try kicking sitting on the edge and being encouraged to put their face in.  Obsidian was working on holding onto the wall and kicking, climbing out of the water by himself, bobs, alternating arm movements, and the "older" skills.  The only person above the main teacher is the aquatic director.  So I went in and appealed to her.  She agreed to have Obsidian in the preschool class again as long as I signed up for a time that the main teacher wasn't teaching it.  Fine.  Guess what.  Obsidian did fine (except getting cold after 20 minutes, but really that is an issue of the water temperature, air temperature, and his lack of body mass).  Unfortunately, the teachers aren't nearly as good (they are all high school students, where as the main teacher taught some of my friends how to swim and the one who wound up teaching Obsidian is in her 20's).  I would love to get Pyrope back in main teacher's class.  Obsidian however was not exactly nice to her after he heard her saying he was too small (as in he would screech at her "I big.  I swim." then spit at her... um, kid that is not really helping your case).  I wish she would have looked at Obsidian for who he is and what he can do instead of his size (and to a lesser extent his age, if he had been a big 2 year old, I doubt she would have asked his age).  They used to do private lessons, but stopped them.  I would be willing to do that with Obsidian (I do understand he is young but at the same time skill wise, socially, and cognitively he does not fit into the baby group).  I'm going to see how the remaining lessons go for Pyrope, and if he is learning anything (which the first lesson he didn't from the high schoolers) we will stay with what we have.  If not, I'm back to the good fight.

Roll With It

For the most part, I like my job (my work outside the house job).  I choose it quickly and mainly for practical reasons that had nothing to do with the job or the environment.  My grand plan was if I found I didn't like it there, I would find a different job when it was practical.  I've been there for over 5 years now, and generally like it.  Since I got pregnant with Obsidian, I have worked 8 hours a month (well with a 9 months of no work thrown in as well).  Occasionally 16 hours in a month.  For the past 4 weeks, I've been working 20-24 hours a week.  No ramping up, just dove into more hours.  I had not worked a week day at all prior to the 2nd last week in October since April 2008.  I was expecting more of a shock to my system, but it has gone surprisingly smoothly in many ways.  However, I'm annoyed with my co-workers.  In the past, I've been annoyed with one person or another at various points, but not the multiple people I am right now.

Several weeks ago at work we switched from paper to computerized (mostly, there are a few things we still have to do on paper which is driving me mad at this point as I keep forgetting to do them).  This day was my first work week day back.  Our field is going to computerized everything.  In 10 years, there will be very little work that is purely done on paper is my prediction.  It is fairly accepted by everyone that we will be "all computerize" in a similar time frame.  A significant number of my co-workers are complaining about this change and how much they hate it and how much more productive they were when using paper.  There are some issues with the computer program we are using.  Some just being quirks we will learn to live with or navigate around.  Some being more serious and will most likely lead to changes in the program.  I'm sure it is not the "best" program, but I know I've worked with far worse.  I don't see much if any point in endlessly complaining about "going paperless".  It was going to happen.  It was just a matter of a specific time.  So basically whine and complaining gets us no where, we just have to get through this.  I try to be understanding of my co-workers.  I know I have several advantages.  I'm a touch typist (when I was 10, my dad decided that one of the "jobs" I had around the house like doing my homework, clearing the table, folding laundry, exc was to spend 15 minutes per day in a touch typing program until I had the full keyboard at so many wpm, if I didn't do my 15 minutes, I got punished.  I hated it and thought it was stupid, by the time I reached high school (to say nothing of college and beyond), I was grateful of that "job").  I've worked at other "paperless" facilities so it isn't really that foreign to me.  And most of all, I don't get worked up about things particularly if they are going wrong.  I just have the urge to yell "Deal with it!" when people start their rants.  Instead I say "Calm down.  Slow down.  Take a deep breath.  Let me see if I can help you."  Let me tell you what this does to my productivity.

Another issue has been snippiness between co-workers.  A unit is being moved to a different facility.  As a consequence, the department that I'm part of is going to have to be split.  Some will stay, and some will go with the unit.  At first there was tension among the department, then as the process of choosing who was going and who was staying started officially, people got down right mean, rude, and embarrassing to call co-workers because of how they were treating each other.  I can't stand back stabbing, and I've seen way too much of it.  I have said on occasion that I don't like seeing that behavior and the some comments were completely off base (one co-worker told another that she shouldn't mind working holidays because she "doesn't have any kids"... I can't even tell you how hurtful it was to this person, I know she wants to have kids, it just has not been in the cards for her yet.  The only thing I really can say was that at least I spoke up and said how incredibly rude and unprofessional the comment was.).  This has made me a target as well.  As much as I want the unit to stay at the facility I'm at now, I want the move to be over.  Originally it was supposed to be Jan 1, now there are rumors that it won't be until spring. 

So with this in mind, I've been toying with the idea of looking for a different job.  I don't really want more hours (well the hours are good for now, we did some major home improvements that need to be paid off) and I like how easy it is to come in and do a job I know.  But my co-workers are driving me nuts right now.  I'm trying to give it time to calm down.  Some days I do better than others with convincing myself waiting before deciding is the best choice.

Thankful Thursday

• That I am a touch typist, and that I used to be a fairly good one at that (I just would have to practice more to get my wpm up again)
• This beautiful weather we have been having, Pyrope is still riding his bike to school, which is amazing where we live
• That I'm a person that doesn't mind change.  Don't get me wrong, sometimes I don't like change, but for the most part I can roll with it, and in many cases I like change.  In particular at work lately I've been reminded that this is not the case for everyone.
• Books.  I've been needing escapes lately, and I've had a series (both as in a series by the same author and as well as multiple unrelated books in a row) of good reads lately, and I'm thankful I can get lost in someone else's world so easily.
• My mom.  She has really been watching Pyrope and Obsidian a lot lately.  Both boys love her and I'm so grateful to know that they are being well cared for while Jet and I are not around.
• To have the chance to hold infants recently.  I don't particularly enjoy the infant stage of my own children, but I LOVE holding infants (it is just the not sleeping, crazy hormones, crazy glucose values, recovering from pregnancy, and the complete 24/7ness of newborns/infants I don't enjoy).
• Pyrope and Obsidian love playing pretend as much as they do

Wordless Wednesday

If anyone knows how to rotate pictures, let me know, this is driving me nuts not to be able to rotate things...

Embarrased

So after I had my milkshake, I used a nifty A1c Now test to check my control over the past 2-3 months.  I love that in 5 minutes I know what it is.  I love that it is in complete privacy.  No one else knows it.  It was embarrassingly high.  My highest ever.  I wasn't expecting it to be good.  But I wasn't expecting that either.  I took a picture.  For the first time in I don't know how long, I had the picture printed.  It is now hanging on my bathroom mirror.  In a month, I'll do it again.  While it measures your last 2-3 months average glucose, it is more weighted towards the most recent, and I should see a change in a month.

Sometimes I hate this disease.  I really do.

Sweet Sixteen

At just exactly about the time this will be published, 16 years ago I was diagnosed with Type 1 diabetes.  In many ways, I don't know where to start, or what to say.  Sometimes, in some ways, it still seems surreal.  Most of the time, I can gleefully imagine what my life might be like if I was cured, but diabetes is so currently woven so tightly in with my life it is just part of me.

Because of how sick I was when I was diagnosed, the memories surrounding that time are fuzzy or just plain missing.  Which is very unusual for me.  It is not that these are faded memories, I was so sick, even at the time I couldn't remember what had just occurred.  There are two moments that I very clearly remember making conscious decisions that really have affected how I have lived my life since them.  In some ways they are related to diabetes, but in others they are entirely independent and not really related.  If my diabetes were to be cured tomorrow, both of these decisions would still have a drastic affect on my life.

The first was on the drive to the hospital.  I clearly remember looking out the window and pondering what was happening.  I thought I had 2 options with dealing with my diagnosis.  The first was to be a huge pain and let everyone know how unhappy I was about it, be as big of a pain as I could, and try to avoid to do anything related to diabetes.  The second was I could accept that I had diabetes.  I didn't have to be happy about it, but I didn't have to make everyone around me as miserable as possible as well.  I could learn all I could, and live the best way I knew how with the knowledge I had, trying to minimize the impact it had on me and everyone around me.  I thought about the first option so more.  While it sounded good to let everyone else know how miserable I was about it, I figured it would make me more miserable-- not less.  Making others miserable would not really make me feel better.  I would most likely miss out on a number of things I enjoy because I would be too unhappy to participate/enjoy them or my parents would let me go if I didn't have the knowledge to take care of myself.  On the other hand, option 2 sounded like a lot of work.  I really was not happy about the situation in general.  Within a few minutes, I decided that option 2 was the path I was going to take, no matter how hard it would be at times.  For the most part, I've stuck with this decision.  Don't get me wrong, I whine about diabetes, sometimes more than others.  But I don't try to make others miserable about it, and I try to be as educated as I can.

The second decision came my way by the life of a 5 month old baby boy.  He and I were the only two "long term" patients on the pediatric floor of this hospital.  Other kids would be in for a night, but that was about it.  I was there for 6 days.  I have no idea how long the baby was there for, he was there before I was admitted, and he was there after I went home.  After my first 24 hours where I was seriously ill, I was bored.  Really bored.  Being the oldest of 5, and always in the position of caring for others, I naturally started playing with him if for no other reason to kill the time.  He didn't cry, he didn't eat, he didn't do much of anything.  No one came to visit him.  (I had my first visitor less than an hour after I was admitted...)  At first I just "flirted" with him, then I asked to hold him, then I asked to try to feed him the bottle that he was refusing from everyone.  With some discussion between the nurses and residents, they decided that they probably should not let me try to feed him, but on the other hand he had been refusing to eat and unless someone could get him to eat he was going to have to be tube fed.  Seeing he was responding to me by this point but no one else, I was given the bottle.  And he ate.  The next time it was bottle time, he once again refused from the nurse but immediately took it from me.  The older nurse looked at the young resident and said "See, I told you what is wrong with him is he is dying from lack of love."  I remembered thinking, "THAT is the bottom of the barrel.  To be literally dying from lack of love.  I know I will never be that low.  There will always be someone worse off than me no matter what happens."  And that idea has stayed with me.  No matter how rough things are for me, in the back of my head, I think of that baby.  I think of how old he is now.  And I say a prayer for him.  A prayer for others, particularly babies and the elderly, who feel so unloved they are literally dying.  I say a prayer of thanksgiving that I have so many that love me and that I love.  And no matter what, at that point my problems seem just a little smaller, and a little more manageable.

So I've done it.  16 year of me and diabetes.  Time to go get a milkshake (my yearly celebration, someone made the mistake of telling me that I would never be able to have a milkshake again, so I've made it a point for having one every year to mark the day... and I've got quite talented at bolusing the right amount so it doesn't take my glucose levels all over the place).

Pregnancy and Infant Loss Rememberance Day

I don't remember ever not being aware of the sadness the loss of a baby brings a family.  When my mom was pregnant with me, her brother's wife was pregnant and due within a couple weeks as well.  It was a family guessing game who would be the oldest grandchild.  Part way through their 2nd trimester, my aunt lost the baby.  So I became the oldest, and a 'shadow child' as my mom referred to me in regards to my cousin.  While my mom calls me the 'shadow child', sometimes I think the babies that are lost are really the 'shadow children'.  An echo that many forget is there, but it is always there.  They seem to be easily forgotten by others that are not directly touched, but can loom large for those who do remember. 

Yet, fortunately I'm on the outside of the loss as I have never lost a baby of my own.  While I'm touched by the babies and their lives that were too short, I'm on the fringe.

I go with my mom on her visits to my youngest sibling's grave when she asks me to come.  Particularly in the last 6 months, I've listen to my mother-in-law go over and over and over the details she remembers around the birth of her youngest daughter.  She was born still, at full term at 7 lbs 11 oz, but much past that the details are murky at best.  I've sat and listened to friends talk about their babies lost to pre-eclampsia, umbilical cord accident, placental abruption, congenital defects, ectopic pregnancies, illnesses caught too soon after birth, SIDS, and some rare complications of pregnancy.  I've seen and treated women in ICU and rehab as they fight for their lives or to regain some of their independence after something in their pregnancy went wrong.  Some of those women have lost their babies, some of the babies are simultaneously fighting for their own lives on a different floor in the same hospital, and on a couple of occasions the babies have been healthy at home in the care of grandparents/aunts/uncles while their mom is fighting and their dad is torn between the two.  When I'm at work, I know how to do my actual job, but other than that, I'm sometimes at a loss of what to do.  I sit, I listen, I offer a hug, or a tissue, or a touch.  If I remember the baby, I try to say that I remember, to say their name.  And always a prayer, sometimes silent, sometimes shared.

Thankful Thursday

1. "Attitude adjustments" -- this is something my parents taught me to do as a child, and has been useful lately.  Sometimes even if I can't change the situation, if I change my attitude towards it, it is more manageable.
2. Bike rides and hikes in the fall.
3. Fresh apples picked off trees.  Yum.
4. Obsidian "graduating" to physical therapy once a month.
5. Pyrope doing well socially in school.
6. All of the ivy is out of our yard, and grass is planted.
7. Thick, heavy blankets.  I love curling up under them and once again, its that time of year I pull them all out.

Wordless Wednesday

Brighter

Obsidian was "graduated" to physical therapy (PT) once a month at his last session instead of once a week.  He has made great gains over the past 2 months he has been in PT again.  The first time he was in PT, he made gains, but not nearly as rapidly as this time.  The first time (almost exactly a year before), he was less than cooperative.  He would scream and refuse to work, and never worked when I was in the room or knew I was looking.  This time was an entirely different experience.  At times he has to be coaxed to do things, but for the most part he is cooperative.  He enjoys PT for the most part.  In some ways, I think he was just ready to make significant gains, in other ways I think he was just more with the program.  The only thing he really refused to do was to ride the smallest tricycle, the one that he rides there he has to sit on the crossbar or his feet can't reach the pedal.  Obsidian has my gift of stubbornness, I just hope he learns to control it, not let it control him.  It took me a long time to learn that, and I still have to work on it.  The first time he stopped going to PT because our insurance would not cover it any more.  I was not happy or comfortable with it being stopped.  This time, I am comfortable and ready to have him cut back.  I would even be a lot more okay with it being stopped if needed.  He has reached most of the goals that were set, and is well on his way to reaching the others.  Now, he is no longer deep in the "moderately" delayed gross motor, to more of "mild" gross motor delay. 

As I was driving home from PT, the colors on all of the trees seemed brighter.  I seemed lighter.  I still have hope that Obsidian's gross motor delays and possibly even his growth will be come interesting chapters in his past, but something in his past that he has "outgrown".  I am becoming even more hopeful that even if they are ongoing issues for his entire life, he will find a way to integrate them into his life so they do not have a significant negative impact.  Small steps.  For now, I'll take my more brightly colored trees.

Your shoes

Earlier this week I came across this article understanding where moms' time goes when I was on Facebook.  It was written 3+ years ago but for whatever recently started making its way through Facebook now.  I have been reading the comments about the article with interest and thinking about all of it.  At the end of the day, the crux of this article gets to for me is not about being a mom and what that specifically entails, but it is about being empathic to a friend.  It is about empathy when a best friend's life circumstances change.

I have thought about the many different situations that I have heard the basic same complain, either from the "friend" or from the person with the circumstance.  I have heard and read things of how others are less than understanding when a person with rheumatoid arthritis, multiple sclerosis, fibromyalgia, Crohn's disease, chronic pain, can not work or go out and do other activities.  I have listened/read how these individuals list out the steps that they personally need to do just to do basic functions.  Steps that are different than common, and frequently more time consuming and complicated.  Yes, one person with RA might be able to do X, but that doesn't mean another person with RA can do X as well.  One mom might have the time to do Y with her friends like she used to, but another mom might not.  One person isn't better than another, we all have different life circumstance and deal with things differently.

When Jet has had a long or stressful day at work (or time period at work), he doesn't interact much with others.  He comes home, eats, then works on something mechanical alone, then gets ready for bed and sleeps until it is time to go to work again.  In a study of contrast, if things are hard at work, I'll talking a mile a minute to Jet (or on the phone to a non-work friend) the second I walk through the door.  I will be making plans of something to do with somebody that evening before I go to bed.  Neither reaction is "wrong", just different.

I had separately been thinking about a post my high school age niece made on her blog a week or so ago.  She was lamenting how her friends don't understand why she can not "just hang out" that much in the school year because of her dance classes.  The confusion she was expressing over her relationships with her friends changing because of her lack of time made me sad for her.  I wanted to tell her, or really have her figure out, that a relationship is going to change if you used to spend 20 hours a week together, and now you spend 2.  All relationships change.  While she loves to dance and spend a lot of time at the dance studio, it does have consequences that some are not positive.  She might be a better dancer but she won't have as much time for outside relationships and activities.  How to say that you need to find balance in your life, a balance that you are happy with living.

So all of these things started to fall together in my mind.  Life always means changes.  Time and activities and the frequency we do them changes.

The friend in the article isn't particularly someone I would want as a friend.  She doesn't show much empathy, and she makes some sweeping generalizations.  I have child-free friends who understand when I don't call or do things as much as I used to.  They are the same friends (as well as friends with children), who understood when I didn't call and do things when I was busy being the primary care giver for my great aunt in her last days, or when I was dealing with Jet and his problems finishing school, or when I was helping with my dad when he was dealing with cancer.  Life circumstances changes, activities change, we change.  Our lifelong friends are those people where the relationship also changes to reflect the people that are in it.  A friend tries to see the situation from my shoes.  And at the end of the day, she shows me some empathy.

Maddening

Today I got a call from my "health care coach".  I get one every month, or maybe it is 6 weeks.  I try to forget.  At any rate, if I talk to my "coach" at whatever the prescribed interval is, I get a significant discount on some of my diabetes medications (some I don't have to pay co-pays, some my cap is lifted, some both, which leaves the things that are not covered a whole lot easier to swallow).  Some of my "coaches" I've had through the various carriers I've been covered under I've liked more than others.  This one I don't like.  At all.  And I don't think she likes me.  However, until our coverage is changed again, she and I will be talking regularly.

She started with my goal is to get my A1c lower.  Yeah.  She then said that I need to work on not having so many highs and lows.  That would be spectacular.  The conversation quickly went downhill from there.  We only got to about lunchtime in my daily routine before she ended the painful conversation.  I know it will be continued at a later date.  I know I got labeled "non-complaint" or "argumentative" or some similar negative labels in my chart.  Her basic suggestions were that I do the same thing every day.  Eat the same (or similar) foods at the same time each day, at regular intervals.  That I should get up at the same time each day.  That I should have a similar activity level at the same time each day.  I don't do well on any of these things.  That is why I have a pump.  That is why I accept the negative parts of pumping.  I'm not going to get up at 5 am every morning because on the mornings I work this is what time I have to wake up.  I have not the faintest idea how I would keep my activity level the same on a day to day basis.  I have a physically demanding job, and some days it is much more physically demanding than others.  On days that Pyrope has preschool and the weather is nice enough (and really this means that it isn't freezing cold, raining hard, icy, or really windy) I ride my bike 3 miles round trip to drop him off, then 3 miles round trip to pick him up.  On the nights that Jet gets home at a reasonable time, I try to go run a 5k.  Twice a week I take the kids swimming by myself.  Then throw in the Parent & Tot classes of anything from gymnastics to ice skating (depending on current age, interest, and schedule), outings, and random hikes and bike rides, it is rare that I do things the same two DAYS in a row, let alone every day.  And how do I account for the general increase/decrease my body needs of insulin depending if I'm pre/post ovulation?  I know some people that are creatures of habit, they do close to the same thing every day.  The do close to the same thing every day at work.  In some ways it would serve me well to be more of a creature of habit, but I'm not.  I tried for a while, and I was a miserable person who still wasn't great at following the same patterns.   If I didn't have diabetes, doctor's wouldn't care much about this.  But since I do, many doctors and medical professionals put all kinds of negative labels on me.  I'm not a pancreas.  I do my best to think and function like one, but I'm not great at it.  It is maddening to talk in these circles.  Sometimes I think maybe I should "listen" to them and try to be more scheduled.  And then I think, no.  I don't know how to live my life, or if I really could have the life I have now if I had one schedule I had to follow day in and day out.  I couldn't have the current mainly SAHM but work when I need to lifestyle.  I couldn't ride my bike randomly with my kids (where I live it is not an option to do it year round).  I would have to give up running or find a sitter for my kids.  I would have to find a job in a different area of my profession.  I would need my ovaries removed.  For all of the problems I have with my life, I really do like it, and I don't want those types of drastic changes.  So I think I will for the time being continue with the game of talking and disagreeing with my "coach".  Or maybe I'll switch strategies and agree with what she says/suggests, then completely ignore what she said.  The latter being the path of least resistance if I can manage to stomach it.

Thankful Thursday

1. Our new windows.  We turned on the furance this week.  It has not turned on nearly as often as it would have before we got the windows.  Cosmetically the windows didn't do much for the house (or me) but thermal regulation they seem to be making a huge difference
2. Getting a great deal on Pyrope's new bike.  He really didn't need one, but he had been really wanting a bike with a flame job (think hot rod cars or motorcycles).  I found one that was used that was advertised as his size.  It wasn't, it was the next size up.  Not surprisingly, he figured out very quickly how to ride it just fine.  He is over the top happy about his new bike.
3. Being allowed to park "on site" for work.  There is a lot of construction at work and as a consequence, not everyone can park "on site" (you still have a fair walk, but it is in walking distance).  The idea of having to take a shuttle (which sometimes they are full) to a remote lot just is not fun.  Particularly because this is going to be like this for a year.
4. My mom and her baby sitting of my kids. It is awesome to have family that I trust to leave my kids with when I'm working, out on a hot date with my man, or doing something one-on-one with one of the kids.
5. My slow cooker.  I love having meals ready for me when I come home from work.  On days that I am home, I just love how the house smells when I'm making a meal in the slow cooker all day.
6. Sweatshirts.  They are my favorite article of clothing, and it is the time of year I get to wear them.
7. Pyrope's laugh.  He has a great, infectious laugh.  Even when he was a baby and his nickname was "Stoneface", he always had a great laugh.  One day when I was dropping him off at preschool another mom stopped and made him laugh "because she just loves his laugh". 

Wordless Wednesday

Finding the best words

Sunday would have been my parents 34h wedding anniversary.  Every year, I have the same dilemma.  What should I do?  What should I say?  Since my aunt (my dad's twin brother's wife) passed away, I am the only one who acknowledges the day.  My siblings never remember.  The people in the wedding party (4) are either no longer in contact with my mom, don't remember (dad's twin), or deceased.  Her brothers don't remember either.  I know it is a hard day for my mom.  I also know whatever I say and do is better than nothing.

This year, my mom made a spur of the moment trip to visit my sister to help her with a project for her classroom.  This is the first time my mom has visited my sister in the year she has lived there (and I don't think she ever visited her in the 4 years she was at college, she only went to help drop her off twice in those years).  I find out about the visit from a strange message on my answering machine from my mother letting me know that she was not going to be home the next day (her anniversary) and I was the only one that would visit her that day so I was the only one that she was going to tell that she was leaving.  Brother #2 might have stopped by to visit her that day but he would have been clueless to the meaning of the day and wouldn't have thought twice if she wasn't there when he stopped by.  A quick phone call to my sister to warn her of what the occasion was left her cursing (and promising to not mention that I called to tell her).  My sister wound up doing what I do, buying my mom flowers and wishing her a happy anniversary.  I did the same (just delivered a day late).  I always think about a card, but I never can find one that is appropriate.

So I do my best, I let her know I'm remembering with her.  I get her flowers just like my dad always did.  I get to think about others around me.  I know my mom is a bear to be around on that date, but for the most part there isn't a living sole that knows why (other than me, or whatever person I alert that year).  I wonder how many people who are seemingly just "having a bad day" are having a difficult day of remembrance with no one to remember it with.  For a while, I always seem to be gentler to those in random bad moods.  You never know...

I just pray that I don't forget (I've almost forgot my own anniversary... and I've only had 6 so far).

Truth

It started with a NPR story.  It was about people who thought they had "remembered" being abused after the memory was repressed, but then decide later on that the repressed "memory" never really happened.  A day or two later I was talking with my sister, and we were talking about some events, and her memories were so very different than mine.  In many ways, it didn't even sound like the same story.  I knew were were talking about the same event, but her truth of it was very different than mine (a large part of this particular instance was because she was a teenager at the time and I was in my 20's... 9 years at that point of your life can really give you a different perspective).  Then as I was reading the end of To Kill a Mockingbird, Atticus, Mr. Tate (the sheriff), and Scout were talking about what the "truth" was for the events of the evening (where Jem's arm got broken).  So I got to thinking about what "truth" is.

If you ask Goog.le to define truth you will get:

• a fact that has been verified
• conformity to reality or actuality
• accuracy

But this still was not really helping me with my pondering.  While I would love the "truth" to be more like an objective addition fact such as 2 + 2 = 4 -- there is one answer that is correct, the older I get the more situations the truth seems to be something that is more subjective. I have a very clear memory of driving home with my parents and brother late at night through a really long tunnel.  It was from a relative's house that we don't go to very often.  As a teenager, I asked my parents about this tunnel as it didn't make much sense.  There are no tunnels (long or short) between our houses.  My dad in particular told me I was crazy and I was just making it up, keeping in mind I must have been between 3-4 when this incident happened.  But I was quite adamant that I was remembering this night.  I described some plants that were in the front yard (I have no clue why I remembered them).  Several months later, were were looking through some old photo albums of my cousin's.  She had a picture of us outside from that night (it is HIGHLY unlikely I had ever seen this picture before), and the picture was how I described some of the plants very very closely.  My dad decided I must have really been remembering that night, but couldn't figure out my "tunnel".  A year or two later, I was driving in a different city (but a similar set up for the neighborhood), and I figured out my "tunnel".  I had been looking up at the trees.  In this city, trees, really old trees, line the streets.  Their branches grow over the road, forming my "tunnel" when the leaves are on them.  The relative's house we were at, we typically only went to their house at Christmastime, so there was never any leaves, and no "tunnel".  For whatever reason, the night I remember was clearly a warm evening (as no one was wearing coats) and there were leaves on the trees.  When we went home, we were driving through a "tunnel".  My memory is still of driving through the tunnel, I can see it in my mind's eye, and smell the car, and feel my vinyl car seat, and that is my 3 year old "truth".  Even though as an adult, I know this is not a true "fact".  There is no tunnel. 

Yet at the same time, some truths are facts.  Some event happened at some time.  Some one said some specific set of words.  Then I tried to take into account people's memory of what happened, particularly when emotions are involved.  The more I thought about this, the more I decided that it is when you add emotions and the individual's human experience and interpretation of events, that is when the "truth" has some difficulty being something purely objective that is correct or incorrect, and something that has at least an element of subjectivity to it. 

One of my favorite quotes involves the phrase "universal truths".  If there is such a thing as "universal truth" it implies there are "truths" that are not universal.  This to me hits closer to what the truth is.  When I want to hear the "truth", for the most part what I am wanting for is to get a persons honest version of what happened without any willful distortions/contortions/outright lies.  I want to keep in mind that sometimes maybe multiple people are correct with their different stories of the same event.

Book review

The books I have read this month are:

1. Scout, Atticus, and Boo: A celebration of 50 years of To Kill a Mockingbird by Mary McDonagh Murphy.  An interesting read to make me think about different parts of To Kill a Mockingbird.
2. To Kill a Mockingbird by Harper Lee.  This time when I read it, I spent a lot of time thinking about how different the book would have been if it would have been told through someone else's eyes other than Scout.  Along those lines, I was thinking on how truth is more subjective than objective.  My truth version of an event might not be the same as someone else's, even if we were both there. 

To Kill a Mockingbird is a reread for me and I did it for National Banned Book Week (which is always the last week in September).  I started reading book that had been banned by some group for banned book week when I was in 5th grade.  I was hoping to get a "don't do it" reaction out of my teachers and parents.  I got one out of my teachers but to my confusion, my parents just encouraged me.  Throughout grade school I got more negative reactions to my annual read a banned book and flaunt it that I did every September.  My parents on the other hand helped me choose books that were banned (I very clearly remember them helping me make it through Macbeth by Shakespeare, and my language arts teacher over the top reaction to it).  I'm falling behind with my reading goal, but I have a lot on my "really want to read list".  I started "The girl with a dragon tatoo", a book which my mom bought than loaned to me to read (if you knew my mother, you would know that she never buys books, she will wait months to get it from the library, however she read one of the other books in the series than had to read the first but the waiting list was too long for her at the library).  The new Rick Roirdan book about Camp Halfblood is being released on the 10th of this month.  He is currently favorite author of books that I can just escape into.  I also want to reread "Play to Talk" and "Communication Partners" by James McDonald.  I have been doing this with Pyrope, and need to really read it more indepthly.  When I first got the books, I quickly read through them and decided to give it a try.  Other people as well as myself have noticed significant improvements in Pyrope's speech, so I want to read them more closely and decide what I want to implement more systematically.  I have also been thinking about some of the premises in the book and how they really apply to people in general.  Some of the points I would just like to incorporate into my own communication habits so I can be a better friend, co-worker, and fellow human being in general.  Looking at the list, it is an eccletic mix, a popular fiction for adult women (for the most part), a series aimed at tweens (including boys), and two books that the closest genre is textbook.

Slowly

The reasons I set goals for myself each year, and why I need to review my progress towards them, is clear this month.  They are goals because they are not something I'm doing now and I need to make an effort to change my behavior so I can reach them.  And I need to review my progress towards them because I don't necessarily make the changes, or maybe the correct changes to meet my end goal, just because I set the goal.  It is something I need to keep working on.

I didn't start running again.  I dropped a ratchet wrench and broke my toe. Then less than a week later because of how I was favoring the foot with the broken toe, I sprained my ankle.  This coming Monday I'm starting to run again.

Diabetes goals have cone somewhat the way of the running.  My A1C the when I went to the doctor earlier in the month was the exact same it was in June.  Blech.  I'm going to do a home kit of the test on my anniversary later this month.  I doubt it will be much lower, but I need to start testing more to start getting it lower.

So in this past month I lost 4 lbs.  I would have liked to lose more weight, but if I look at it seriously, I'm content with this pace of weight loss.  1 lb a week will get me to my goal in 30 weeks, more or less.  Looking at it that way, that isn't that long.  I can do it, I can do it, I can do it.

My book goal, and not reaching it for the month was a little bit of a shock.  Reading is such a good release for me, I'm somewhat amazed that I've slipped that far away from it that I'm struggling to reach such a low for me goal of 4 books a month.  I used to easily do that in under a week.  I was also amazed at the effort it was taking me to expand to new kids books.  My kids are enjoying the different books but it is so easy to just read the same ones over and over again.  There are so many books that we even own that I just haven't been dipping into and reading to them.  And they love getting a whole stack of different books when we go to the library.  So this one I have been able to do easily.

So I'm getting to my goals.  Slowly, with revisions of how I'm going to get there.

Thankful Thursday

Today I got to thinking why I do "Thankful Thursdays".  For a good portion of my later teenage years on, I have made a conscious effort to see what there is to be thankful for.  Partly to see the good God has put around me, but mainly because I feel better when I'm seeing something to be thankful for.  The benefits are exponentially more when the exercise is most difficult to complete.

I went into work today for a couple of hours.  I was in a bad mood for multiple reasons by the time I walked into my department.  My department as a whole was in a crabby mood, for a couple specific reasons.  I could feel myself getting to be in a worse and worse mood.  However, when I was walking to treat a patient, I did my normal mental prep work.  This includes if I'm having a bad day and I'm crabby, to try to turn it off at least enough that my patient(s) won't see it.  I started listing things that I'm thankful for, the first one or two came slowly and were excessively difficult to think up.  I did come up with them.  Less than a minute or two later, I'm stepping off the elevator at my destination and I've decided that I really do feel better in general now at this point and I'm making much better decisions.  Among other things prior to this, I was thinking of all of the ways I could get at the person who I share a desk with because she wouldn't let my sunglasses sit on the desk because they were in the way (keeping in mind that she has so much stuff on our desk that generally I can't write at it because there is no surface to write on and too much of her personal junk sitting in our chair I have no where to sit including when she is not even there); I was now thinking that her behavior was annoying, but really doing something that would instigate an all out fight is probably not worth it over a pair of sunglasses...  So here is my list for this Thankful Thursday

1. The weather is finally cooler.  I'm not a huge fan of heat, my favorite weather involves wearing sweatshirts, and we are just entering into it.
2. The fall activities have officially started.  This past weekend we went to a pig roast and we went on a hayride and had a campfire while we were there.
3. Listening to Obsidian talk.  Pyrope was/is not much of a talker.  Obsidian is.  Since I'm not used to listening to a very small person's views of everything, it is even more amusing listening to them.
4. Lazy Sunday afternoons.  This past one I spent listening to Pyrope playing and laughing with my cousin (who is 13) while Obsidian was taking a nap on my uncle's chest.  It was a very laid back, quiet visit.
5. Seeing the leaves on the trees just starting to change color.  It gets back to I love the fall (but I love this enough that it is its own specific item).
6. My sister got me drinking a new type of tea.  I don't drink coffee but I love a good hot beverage in the fall, winter, and spring.  I hate having to put sugar in things, this tea I can drink without sugar.  It is almost like drinking a liquid cinnamon red hot candy heart.  Except there is no sugar involved, but it still tastes sweet.  It comes in caffeinated and caffeine free varieties.  I did find it comes in different flavors as well although right now I have no interest in expanding into a different flavor.  I love this tea.
7. I found where I can buy above tea locally to me (my other options were having my sister buy me some or buying it off of Amazon, both fine options but ones that require forethought when I'm running low).  I didn't even have to go to a lot of different stores to figure it out, a simple status change on Facebook, and I then found out where I could buy my tea.  Yum.

Wordless Wednesday

Breath taking

As a senior in college, I went on a canoeing trip for spring break.  It was on the Green River, in a fairly remote region.  It was a 6 day trip, and after the first day or so, if we needed help, either someone would have to go to our destination, we would have to paddle upriver, or would have to hike up river along the banks.  Knowing my dad and how he worried, particularly with my diabetes in mind, I neglected to tell him of my spring break trip.  I was well prepared, and carried supplies that my trip-mates could help me in a large number of situations.  I took all of the precautions I could, but I decided that it was a risk I wanted to take to go on the trip.  It was a great trip, I'm glad I did it.  My dad (and family in general) never found out about it until my husband was showing my dad pictures, and pulled out that album and to look at.  My dad shook his head, but didn't say much (my dad finding out about the trip is chronologically after he had cancer).

A little over 5 years after my canoeing trip, my dad was diagnosed with a pretty deadly form of cancer.  He made it through a surgery that bought him some extra time.  A consequence of the surgery was he was then diabetic and needed to take insulin.  What his goal was after the surgery was to hike to the bottom of the Grand Canyon again (he had done it once before, maybe a couple years earlier).  Before he was even allowed to drive after the surgery, he was having my sister drive him to the Y so he could walk on the treadmill and exercise so he could take the trip.  That winter he worked out all of the time with that goal in mind.  Early that spring, he was visiting Jet and I (we were living in a different state at the time), and I asked when he was going to hike to the bottom of the Grand Canyon.  His jaw dropped.  He asked me how I knew.  I was slightly confused.  He was leaving the next day for a routine "business trip" (this was the whole story everyone was getting, including my mom).  My dad then elaborated about the details of his business trip.  He was traveling for work, but before the work portion was to start, he was hiking down, spending the night at a camp at the bottom, then hiking back up to the top.  Apparently, many people had been telling him that he either couldn't or shouldn't try.  His oncology doctor and I were the only two people who supported him with this goal.  He asked his endocrinologist how to adjust his insulin for the hike.  She refused to give suggestions of how to do this because she didn't think he should do it.  So he simply made the decision to not tell anyone before the trip.  He was amazed I figured it out (I really didn't connect his business trip with the hike, but I was just asking how he was doing getting to his goal).  Less than a week later, I received a post card from him.  He sent it from the bottom of the canyon, and it started its trip being carried up by mule.  Others got cards as well.  Friendly ones to my mom and each of my siblings.  A thank you one to his oncologist for supporting him, both on his cancer journey and believing that he could do the hike.  And a postcard to his endo that simple read "Ha. Ha. I did it."  My dad was so happy about the trip, and proud of the fact that he hike down and back up 6 months after his surgery.  Jet was once again around when my dad was explaining the postcards he sent when my dad and I were talking about his trip.  Jet dully observed that the apple doesn't fall from the tree (mainly in regards to the "Ha. Ha." card).  3 months after his trip, my dad passed away from the cancer.

It is now 6 years later, and the immediate sharpness of losing my dad has faded, but occasionally things happen when I'm least expecting it that remind me of him.  Sometimes they take my breath away.

Last week, I was reading Post Secret.  The last post card was from an oncology nurse.  She sent in a post card from the Grand Canyon.  A patient of hers that had cancer and her promised each other that whoever got the the Grand Canyon first would send a post card.  The nurse made it there, but the patient had passed away, so she sent the post card to Post Secret.  It took my breath away for a second.  I was sad about missing my dad, and sad that this other person never got to see the Grand Canyon while walking this earth.  I also thought about the "Ha. Ha." to the one doctor and the "Thank you" to the other.  I thought about how deeply as health care professionals we can touch people, and how our patients can touch us.  I dug out my postcard.  I showed it to Obsidian.  He said "Big hole."  I told him that when he is older, we might go there (the closest I've been to the Grand Canyon is the confluence of the Green and Colorado Rivers).  The tree to apple grown into a tree, to the next apple have to connect somehow.

Tonight on Facebook, I saw that friend posted that her mom who had terminal cancer was released from the hospital and that tomorrow she and her two children were going to fly to see her.  2 hours later she posted again, her mom had passed away.  While my friend knew her mom had terminal cancer, she was hoping her mom would still be here in the spring when she is due with her 3rd child.  I missed my dad some more, and wished he could have met my kids.  My due date with Pyrope was exactly the 1 year anniversary of my dad passing away.  One of my dad's last lucid thoughts was that he didn't want the day he died to always be a day to be sad and mope.  I've tried to honor that, and when I found out my due date it took my breath away, but it seemed appropriate.  I've been thinking tonight, maybe I'll try to hike down there with the boys when they are older on the anniversary (I would have to look into what the weather conditions are generally like that time of year).  I've been thinking of the first days after my dad passed away and the sharpness, I would not have been able to take seeing the Post Secret card with the peace that I did in those early days.  I've been thinking about the breath taking moments my friend will have.  And I'm praying for God to carry my friend and her family closely right now.

Wall

I think I've hit a wall.  Hard.  I'm bone tired.  Things have been crazier than normal for a while, but I think things have also just built up to the point I'm exhausted.

I'm tired of not knowing what to do with Pyrope and his issues.  There is something not normal about his communication, and to a lesser degree his interactions with others.  However, I'm not sure how much his social problems being very mild are a case of them being very mild or me "being on my 'A' game" with teaching him social rules since he was tiny.  Since he started preschool and had his private speech evaluation, I've come to grips with the idea that at this point he will not be able to function in a typical classroom without support.  Particularly since meeting with the parent advocate, I've come to terms with the fact that there is very little hope that I will get the school system to give him any support.  I have never wanted to homeschool my children.  With that said, I don't see how I can safely send his to school so I'm beginning to make plans for homeschooling him next year.

Since we have 'officially' stopped looking for a reason Obsidian is so small and delayed gross motor wise, I'm just weary of the questions surrounding his size and delays.  He is who he is, and at this point the benefit of further investigation doesn't outweigh the risk and cost.  I'm just watching, seeing if anything else of concern appears, or if he starts to catch up.

I'm tired of the unorganization in my house.  This is mainly my own fault.  At this point I feel overwhelemed.  I am wishing for a day or more like a few days without anyone around so I can attack it.  I want to get rid of some of the baby stuff that I thought I would use, but then didn't for either boy.  If I didn't yet, I'm not going to, regardless if I have another baby or not.

I'm tired of the 3rd kid question.  Jet feels the subject is close, he just doesn't want it.  I keep coming back to it.  I wish I could move on, but I can't seem to.  I try to ignore it, not talk about it, try not to think about it.  But it always is there.  And always comes back.  I think that I will be finding some peace about "just" having my 2 children.  And I feel extremely blessed to have my two children, and know that many many others are not so lucky.  But that 3rd boy keeps coming to my head.  Each time that another one of my friends or co workers announce an "oops" baby, I'm getting to be more and more bitter.  I want that "oops" to happen to me (but it really wouldn't be an "oops" would it?).  Then I start to think how I would feel if I was infertile, and I feel even more terrible.  Why can't I be happy, or at least be at peace with the family I do have?

I'm tired of the constant battles with medical bills.  I just want to pay the portion I owe and the rest of it go off without a hitch.

I'm tired of coordinating schedules.  Pyrope's school, Jet's four 10 hour days, Obsidian's gymnastics and PT, Pyrope and Obsidian's swimming lessons, the parent and tot events I coordiate, my mom's ability to babysit, the coordination of Jet helping fix various people's cars, my working 2 different jobs in the time I'm not "needed" to do something else.  And then the constant change of who is doing what when, being driven by whom in which vehicle.

I'm just tired.  I want to go sit on a warm (but not too hot) beach.  Or get my house in order.  Or feel like my to do list is shrinking instead of growing.

Thankful Thursday

Despite, or maybe because, there has been so many things happening this week, I've been finding a lot to be thankful for.

1. Jet's willingness to help fix up mechanical things.  For anyone.  He is willing to put in a lot of time, and even more time teaching while he is doing it.
2. Our neighbors to the north.  They don't mind us, I think they might even like us.  There are many reasons that they could not like us.  The kids toys always straying into our yard.  Pyrope riding his bike into their rose bushes.  The constant cars being worked on parked in our driveway which is right next to their patio.  The noise from working on... things.  Jet leaving on his motorcycle at 6 am.  Periodially seeing Pyrope 'watering the grass'.  The list goes on and on.
3. My mom living close enough, being able, willing, and watching the boys when I need help.
4. Obsidian's smiles.  They make up for the stare downs we get into.
5. Despite many near misses, the fact that we have not had any really serious injuries.
6. The fact that although my one job is looking like it is drying up soon, other jobs are always presenting themselves.  It is just a matter of applying and going through the motions.
7. The internet.  It is incredible the amount of information (and misinformation) that is a few searches away.  20 years ago, the amount of time and research to get a fraction of the information was so great.

Wordless Wednesday

What now?

Pyrope has always been behind with speech.  He started cooing late, waving, saying words, combining words, exc.  It has been a concern of mine since before he was a year old.  I work with him on it all of the time, some more formal ways than others.  I've had him tested at various points to see if he qualifies for speech therapy.  Each time I get the same story, yes he has delays, but no he doesn't qualify because he is not delayed enough.  Bring him back again if it continues to be an issue.  It continues to be an issue, and getting to be a larger one.  Most recently, I took him to a private speech therapist (ST).  He was by far the most empathetic of all of the evaluators.  However, he works in the medical model, so it paid mainly by insurance.  Pyrope has some higher skills that pull up his standard scores a lot (not all the way to normal, but high enough that he does not qualify).  However, he still is missing some basic lower level skills, that is making it very difficult for him to function and gain higher skills.  Such as, if you ask him if someone is hungry what do you do?  He will answer you get a bowl, get a spoon, get cereal, get milk, and pour them in a bowl.  Then what do you do?  He can't tell you eat.  If you ask what do you use a towel for, he will say after a bath, when you are wet, keep it in the closet, put it in the laundry, but he can't tell you that you use it to dry off.  Technically, the whole list of things is a skill that should come later than the basic answer of "eat" or "dry off".  But he can't do the basic component of it.  So he gets points for the higher skill but not the lower.  This is really becoming more and more of an issue.  If he falls and huts his knee, he will go sit in a corner, not come ask for help.  If he is asked to go get help, he will tell the person something that is related, but not that they need to come help.  As he is starting to spend more time in school this year, and if don't homeschool him next year he will really be spending a lot of time in a larger group, I worry about his safety.  If he is sick, he doesn't tell you.  If he is hurt, he doesn't tell you.  Someone has to notice then say something.  Then he typically just cries.  I worry about if he gets really hurt.  If the teacher does not directly observe it happening (or the after effects) or a classmate doesn't say anything, he won't.  Or maybe he can't.  I don't know how to help him get past this.  I don't know how I can send him into a class with 24 other 5 year olds and hope for the best knowing he can't express those needs.  Some days he can't even tell you he has to go to the bathroom, he will just start to cry, then pee himself.  Other days he can say something.  Other days he will just go in on his own.  I'm so frustrated with the idea of I know there is a problem.  I know there are professionals who can help him and me get past this problem.  But since the rules say he doesn't qualify, then I can't get him any help.  Even though everyone professional I talk to say there is something very odd about his speech, and how he is picking it up.  And that it is very rare for a kid to have a skill set like Pyrope has (higher level skills in the building blocks that should be needed to get those skills are missing... in a couple of different areas).  I'm tired of having the "rare" kid.  Between Pyrope and Obsidian, some of the words I dread the most are "I've never/I very rare see this happen."  Yeah.  Welcome to my life.  The worst part is almost always the person tells me they don't know what to do next.  Great.  So I'm left with what do I do now?  I'm comfortable with the preschool Pyrope is in, there is 1:8 ratio with the kids.  Next year unless he has made some leaps, I don't know.  I never really intended on homeschooling, but at this point am seriously looking into it.  Until I have the confidence that Pyrope can ask for needed help, I don't know if I can send him.  I don't know if I should send him to a bricks and motor school.

Dear Lord

God, grant me the...

Serenity to accept things I cannot change,

Courage to change the things I can, and the

Wisdom to know the difference

Patience for the things that take time

Appreciation for all that I have, and

Tolerance for those with different struggles

Freedom to live beyond the limitations of my past ways, the

Ability to feel your love for us and our love for each other and the

Strength to get up and try again even when we feel it is hopeless.

I pray for discernment for all decisions with my kids, but particularly ones like this.

Logistics

My life for the past few days has been a logistical nightmare.

I have to back up a little for this to make much sense.  I have 3 brothers (for the sake of simplicity db1, db2, and db3 dear brother 1, 2, and 3; I also have a sister, but she isn't really involved... neither is db3).  The brakes on my mom's car really needed to be changed.  2 weeks ago db1 was supposed to help db2 change them (db1 is 29, db2 is 20 and never had done a brake job by himself so he wanted some help/supervision).  On 4 different occasions, days and times were set up for the two of them to fix the brakes.  Db1 never showed, and only sometimes called to cancel.  The brakes really needed to get done.  Jet had volunteered to help, but Mom and db2 thought db1 should be the one to help as well, it is his mom.  Tuesday on the way home from work, db2 wound up hitting debris from a fatal car accident and his radiator was completely torn up.  Wednesday he drove Mom's car to work and then came over here as the brakes really were done.

Wednesday Obsidian needed to get his stitches out at 8:30.  The company that was putting in our windows were supposed to be here between 8-10 to start.  Jet was home, so this worked out okay.  Pyrope had to be at school at 12:30, and I had to be at work for a meeting at 12:45.  The boys and I had headed over to my mom's house after we picked up Pyrope after Obsidian's appointment.  8 of the 21 windows we were replacing had lead in the surrounding frames, so essentially they couldn't be anywhere near the area that those windows were being worked on (which was 1 window in the living room, 2 in the dining room, 1 in our bedroom, 2 in the boys' bedroom, 1 in a bathroom, and 1 at the top of the stairs... so basically all over the house, for those windows furniture had to be 8 feet away or tarps placed on it).  After feeding the boys lunch at Mom's I left Obsidian there and took Pyrope back home so Jet could take him to school.  I drive into work.  After much difficulty trying to park (they are building a parking garage as well as expanding the building, we were supposed to be assigned to lots, my badge lets me into all lots, but will not let me out of any, and I wasn't allowed into the parking garage as all of the employee spots were full.  So I had to park on the street, which we are not supposed to do either.), I was sitting in my meeting.  My phone rings.  Jet has decided he is going to go help one of his clubs fix a car that was having problems.  So I now must leave work early but it isn't the end of the world. But I really don't have time to pick up Obsidian.  I call my mom, and she agrees to keep Obsidian until db2 come to get her to bring her car to my house so Jet can help him fix her brakes.  (Note: I keep a car seat for both boys at Mom's so if I drop them off there, she can go out if she wants to)  So I pick up Pyrope and bring him home.  Jet, Mom, db2, and Obsidian all get to my house a little after 4.  By 6:45, it is clear that all of the parts that are needed for fixing Mom's car we do not have, and all of the autoparts store can't get the part until Friday.  Mom was going to come sit with my house the next day to let the window people start when I had the boys at speech and physical therapy.  The new plan is that Mom drives my car that night (Jet and I both drive manual transmission cars, Mom knows how to drive them, db2 does not) and takes db2 to his apartment to get clothes, then takes him to her house, so they can wake up and be at my house by 6 so she can watch my kids while I drive db2 to work (Mom doesn't like freeways, and basically refuses to do them at rush hour).  After I get home at 7, I then get Pyrope and Obsidian ready for the day and leave by 8:20.  As I'm waiting for the appointments to start, I get a phone call from Mom.  Window guys have been there and left.  Since we have kids under the age of 6 in the house, they can not replace windows involving lead removal if there are winds over 10 mph.  Yeah.  There were storms all day, definitely winds over 10 mph.  They will be back Friday (the next day) to try again.  They hope to be done between 1-3 pm.  They don't normally work on Saturdays, but agree to finish the job if Friday doesn't work out on Saturday.  So Mom hangs out at my house until I get back to my home, I drive her home.  At lunch time, db2 calls to tell me he convinced a coworker to give him a ride to Mom's house that day and Friday.  Cool.  I still have to drive back to Mom's after a fundraiser at a restaurant, so she has my car so she can drive over to my house the next morning so I can drive db2 to work while she baby sits.  I call dear sister (ds) that lives 1.5 hours away to tell her that I'm not sure when I will be able to get down to visit her.  We were planning on getting there around 3, but I can't leave until windows are done and the car parts are picked up.  On top of this, Mom was going to keep my boys at her house while the lead work was being done at mine, but Fridays are swimming lesson day.  So she was going to drive Jet's car (with the kids) to her house once the window guys get there, then return to my house so I can take them to swimming.  So after I get back from dropping db2 at work.  Jet's car is not there.  And his motorcycle is parked under a window that is being replace.  Yeah.  Call him and find out that he was about to run out of gas with his motorcycle so he brought it back home and took his car.  I point out where he parked his motorcycle.  He says "Oh."  I decide to wait for a neighbor to start to be out in his yard to move the motorcycle.  Now I just wait for window guys.  Jet pulls up in his car, I ask him what he is doing.  The hospital that he was supposed to work at that day didn't have as much work as they thought, so he was done and was going back to his "home" unit, and decided to switch out to the motorcycle on the way.  I am still waiting for the window guys (with my mom and kids in my torn up house).  They don't show.  A little after 10 am, I call to find out.  I'm given some crazy story.  Bottom line, they are not coming that day.  So Jet will be staying at home.  Change plans yet again of who is driving what car where, and it is decided that db2 is bring his broken car to my house instead of db1's house.  Eventually, Pyrope, Obsidian, and I leave by 3 pm for ds.  Jet's day continued to be crazy.  He didn't think he would have a full day of work, but did.  He then went to pick up his muscle car, but the lady next door fell, and the family was having trouble caring for her until the ambulance got there, so Jet helped.  Then the ambulance was blocking the driveway for Jet to take his car home.  Since he had to be at our house the whole next day (the window guys started at 8 am and didn't finish until 4), the guy who was working on the car's wife helped drop the car off at our house on Saturday.  Jet and db2 finished up the brakes on Mom's car (which were in way worse shape than originally though), then rope towed db2's car to our house.  He didn't get to bed until after midnight.  Saturday was a relatively good but very busy day for all.  If all of the car parts for db2 car come in on time, by Wednesday night, I should have a driveway and garage with all fully functioning automobiles.  Which has not happened since mid July.  The logisitics of this last week were just nuts.

Thankful Thursday

This week I have been finding many things that I'm not thankful for.  Some weeks, it is very easy when Pyrope, Obsidian and I say our bedtime prayers to list things I'm thankful of happening in my life.  This week it was really a struggle at times, but at the same time, those are the weeks I really need to remember the good with the bad (or bitter with the sweet as I was told frequently as a child, "Ruby, you can't understand and appreciate the sweet unless you also have the bitter).  So in no particular order, here is what I'm thankful for this week.

1. Friends that have a sense of humor.  I was at a meeting and trying to balance money we collected for some events.  Things were not balancing, we kept trying and it was not coming out (this should have been the last "easy" step, as each event had balanced and now we were just making sure the totals were correct).  I then realized I was literally sitting on an envelope with money in it (I had put it there because it was the first event that was done, and I wanted to remember we had already completed that event).  We laughed.  Others would have been mad at me (as we had just spent the last 10 minutes trying to figure out what was happening).
2. Quite time for me.  Pyrope started preschool and Obsidian naps during the same time.  So I'm as close to "home alone" as I have been in years on a regular basis now.  And I'm loving it.
3. The physical location of my home.  When Jet and I were looking for a house, we wanted it within a mile of a library and at least a convenience store.  We are within a mile of those two, as well as being a 1/4 mile from the K-5 school our kids will most likely go to, slightly over a mile to two different grocery stores, 1.25 miles from Pyrope's preschool, a couple different playgrounds, a bike path, and a very nice park are also all within a mile.  Just as importantly, there are sidewalks that I can safely bike with the kids to do these.  So many people I know live where they are not within a reasonable distance or there is no safe way to travel that distance (although this was a very conscious decision of our as there were MANY houses we eliminated solely for the reason they were either too far from "things" or there was no sidewalks/safe way to access those places if you were not in a car).
4. Access to good medical care.  Obsidian's cut through his lip was a pain to deal with but if it was 100 years ago, neither the ability to stitch him up so he wouldn't have problems with closing his lips for the rest of his life or the antibiotics to protect him from infections while he was healing existed as they do now.  While this was an annoyance for a brief amount of time, it will soon be a fading memory, or just a story to share.  In the not that distance past, it could have been a life threatening or debilitating event.  To this day, in other parts of the world, this would be much more serious than it is.
5. The new Radian car seats I just got.  Car seat safety is a soap box of mine, so good car seats is always something I'm thinking about.  I also drive a smaller sedan, and really don't want to get a mini van.  I don't need the space for the most part.  I hate using more gas to move a vehicle the same distance just because it is bigger when I don't need bigger.  However, I'm starting to car pool more, so I've been needing to put 3 kids across the back seat.  And 3 car seats were not fitting across with my old ones.  I can do it with Radians.  As an added bonus, both Pyrope and Obsidian like the Radians.
6. My MIL's colonoscopy came back clean.  This is the first time since the first cancer diagnosis came that a new medical problem has not come up during a screening or procedure.
7. There were 3 days Pyrope and Obsidian slept in until 8 am.  This never happens.  I get excited when they sleep until 7.  Both of them sleeping until 8, on the same days, multiple times in one weeks is unheard of.  I have never been huge on sleeping in, but it has felt wonderful.

Wordless Wednesday

Benefit vs risk

Obsidian had his dilated eye exam.  To put it mildly, he hated the blurriness that you get when your eyes are dilated.  He didn't complain too much when getting the drops and calmed down right away but the fury when his eyes started to dilate.  Unfortunately, it is really hard to explain what is happening to a 2 year old.

The good news is that he doesn't appear to be near or far sighted and all of the structures in his eyes that you can see appear healthy, including his optic nerve.  I expected this to be what was seen.  However it doesn't really help with deciding what the next step will be for trying to figure out why he has the issues he does.  Neither Jet or I am really that comfortable with having him sedated so a MRI can be done unless it is absolutely necessary.  Part of the question is, what are the potential benefits from having the MRI.  The MRI might or might not lead to a diagnosis.  The two things that the neurologist and geneticist would be mostly be looking for is the structure of the pituitary gland and signs of a mitochondrial disease.  Unless it is a cancerous tumor of the pituitary (which is very very unlikely), there is nothing they can do treatment wise for either problems with the pituitary or a mitochondrial disease.  Pituitary gland problems, they treat the hormone that is not being produced in correct quantities, and Obsidian has already been tested for those and they are either in normal range or he is too young to start treating the potential growth hormone issue.  For mitochondrial disease, they just treat the symptoms.  For the most part we are already doing that.  He eats frequent meals, in whatever amount he wants to eat.  We try not to expose him to too much heat as he doesn't tolerate it well.  So while we might get a diagnosis (which is a huge might), there is no treatment for what they are looking for (there is always the chance they find something they really aren't looking for, but I'm not even going down that road).  So Obsidian would be exposed to the risk of sedation without any real benefit treatment wise to him.  If he still needs a diagnosis when he is older and bigger, we could do the MRI then.

So now we just have to tell the doctors, thanks, but not now.