From the mouths of babes

Chris has a loose tooth.  In fact, it is crazy loose, but it won't come out.  This is the conversation he and I had yesterday morning:

Me: Chris, is that tooth EVER going to come out??
Chris: I'm not ready for it to come out yet, and it is following my orders.

I swear, I cannot make this stuff up! 

Matthew has a new friend...

Click on the photo to open the video

Cutting the nose to spite the face

Like nearly all districts across our state, my district is in dire straights when it comes to the budget.  We already do "more with less" and our class sizes are astronomical.  We've been promised that our district will NOT increase class sizes any further, which means, in theory, that teacher's jobs will not be cut drastically next year.  This leaves the district with the need to cull elsewhere.

The latest lambs that are being led to slaughter are our school nurses. 

Middle and I are going to a town hall meeting tonight to protest this.  I have heard the argument  -  why can't a school secretary put on a band-aid, as if that is the only job of nurses in schools!!

Middle, for one, is chronically ill.  He may not look sick, he may not act sick, but when you think about it, having Diabetes makes him chronically sick.  He needs constant supervision during the day, and during the night, to ensure his sugar levels are OK.  It is a little easier now that he is on the pump, but even so - there are times the nurse needs to use her medical training and knowledge to handle a bolus situation or give an additional injection.  I have no faith that a secretary would take on such a truly life or death responsibility.

Some students in California are being denied their right to a Free and Appropriate Public Education (FAPE) because they are diabetic.  The school districts, in an effort to cut costs, have eliminated nurses on many campuses, or make the campuses "share" nursing services.  Because there is not a nurse on campus in case of emergency, if a parent cannot be at school with the child that day, the child cannot come to school.  How fair is that??  (And yes, the ACLU is all over that!!)

I get it we need to cut costs.  How about we start with our Superintendent's inflated salary??  Leave the nurses alone!

Hope

One of my favorite poems is Emily Dickinson's HOPE IS A THING WITH FEATHERS THAT PERCHES ON THE SOUL.  I love the imagery in it, that hope is this little bird that comes to sit on your shoulder.  You have to be ready for it, quiet and still.  A bird is not going to just fly in for a landing in the midst of chaos.  If you are lucky enough for it to happen, you need to be waiting for it.

I think, too, that having Hope takes courage.  It's risky to keep believing something better will come around.  I mean, what if you're wrong?  Then what?

Eternal doubt keeps us from being quiet and waiting for Hope to show up.  It's hard, this waiting. 

Today was a rallying day, of sorts.  Folks from across the country to are affected by Type 1 Diabetes showed their Hope for a cure by either wearing the word on their clothing, or writing it on their hands.  I know medical science is making great strides, and that things for folks with T1D are much better now than they were then, but having hope for a cure - real, strong hope - takes a lot of effort.  When you are concerned with boluses and blood counts, carbs, making sure your son or daughter is healthy, knowing that at any moment the bottom could drop out and your child could end up another horrifying statistic, the noise of is all is deafening.  It's hard to have HOPE during those time.

So we have to STOP the Chaos for a while.  We have to be active in our fear, take charge of it and put it in its place.  Because Hope is real, and Hope is so tightly tied to Faith that they are nearly synonymous.  And it is so HARD to have faith all the time when things are going south.  You begin to ask those unanswerable questions, the ones that, when heard spoken by someone else, sound self-pitying; the ones that look like "why ME?" 

If we can truly stop the chaos, if we can make the effort to calm down, allow peacefulness to wash over us, then maybe, just maybe, we can being to see Hope again.  And soon, when amazing things are ready to happen, we will be ready to have them land softly on our shoulders.

The boys of summer are here!

Spring training has officially begun, both for those making a gazillion dollars to chase a ball, and for my little all-stars as well.  Oldest and Youngest are playing this year - Oldest is back in the Majors with the Red Sox again (this time, I think it will be a much better experience than last year) and Youngest is playing coach-pitch AA league for the Angels.  We originally signed him up for T-ball, but who knew??  They eliminated T-ball last year!!  He has two good friends on his team, and the coaches seem to be really great with the kids, so I expect this, too, will be a good experience. 

Of course, watching the games will be a tug of war between pride and hysterical, painful laughter. They are so cute, and so bad right now!!  They will get better, and it will be fun to watch the growth.  Oldest has a new position, too - team mentor!  He is volunteering to help coach, and has found his calling for sure!!

Middle still has absolutely zero interest in baseball, but Uncle Tony is here from Minnesota for the big Scottsdale Arabian Horse show, and Middle now has a serious interest in horses.  Of course, those of you who know me know this is music to my ears, this is a child after my own heart, etc, etc...  He will take a real riding lesson (Thank you Groupon) at the end of March and we will see how he likes it. 

Middle's numbers continue to be a source of everything from curiosity to stress.  We will see how is A1C levels look the next time we go see the endo (note to self - must make that appointment) but it is my guess we are in better control now than we were three months ago.

We all love the OmniPod pump, although there is always room for improvement and I have a small list of things they should consider when going through a design overhaul (bigger viewing window so we can see if the cannula is under the skin is one).  I cannot imagine going back to doing multiple daily injections... for instance, I went to check on him when I got up this morning and he was a bit high (221) and I was able to get his PDM and give him a bolus without waking him up.

You might wonder how I knew his blood sugars without waking him to test - but remember we are also card carrying members of the Continuous Glucose Monitor set, and Dexie as we call it, has made a huge difference in our lives. 

While I hope for a cure, I also hope for advances in technology that will allow kids like Middle and the others I know to have an intuitive machine to help them manage this disease.  We can keep him stable, but it is an ever vigilant fight; no matter what else is going on, we are always asking the question "how are your numbers" and adjusting either our meal plans, or our daily plans, or our sleeping plans to ensure Middle is safe.

The whole world of diabetes care is not getting easier, necessarily, but it is getting more routine.  My fear with that, and all things 'comfortable' is that is when bad things happen.  But, puberty is right around the corner I'm afraid, and that will bring with it it's own snake-pit of issues, so may as well enjoy the little bit of quiet before the storm hits!