Monday, May 25, 2015

Unwanted Publicity

We hadn't seen each other in some time, so it was natural for her to ask, "Are you still homeschooling?' When I affirmed that yes, I was still homeschooling William, she got a mischievous look on her face and said playfully, "Well, you know that's becoming rather shady these days."  She laughed out loud. I was reminded why I don't socialize much except with close friends.

I grimaced in the approximation of a smile.  "I'm aware," I said, "but those cases aren't about homeschooling.  I think they're about entirely different issues."  Fortunately, she dropped the subject and moved on.  In just a few short weeks, the media has focused on sexual molestation within two homeschooling families and on one family that lives in conditions less favorable than the horses and feral cats in my barn.  Because the three families "homeschool", this gleefully stirs up the mainstream to wallow in our weirdness. Because abuse never happens to children that attend school.  (Sarcasm alert.)  

Earlier in the week, I attended a volunteer meeting.  I was new there, a stranger among people acquainted with each other.  They were very nice, but of course, the inevitable question arises, "Where does your child go to school?" Now, you might think it a mild and safe question, but much can be read into the answer.  Perhaps your child attends Namebrand Country Day or St. Money in the Fields. Wealth drips from your answer. Perhaps a public school?  But if it is north, south, or in the middle of the county? Inferences can be made.  Perhaps a magnet school or parochial?  Lots of information there.  But no, I answer, "I homeschool."

"Oh."  the woman next to me pauses.  (I've never heard this before.) "You must have a lot of patience to homeschool.  I could NEVER do that."  I smile.  It reminds me of the time someone that said they could not homeschool because her children didn't listen to her.  I retorted that perhaps her children didn't listen to her because she didn't homeschool.  (She did end up homeschooling a year or two later.)

Back to the conversation.  I explained that I had always homeschooled, so I grew in my abilities to teach as they grew older.  I didn't just pop into the job.  Mindful to listen back, I asked what she did.

"I teach kindergarten."  
So, she thought managing a class of five year olds was easier than teaching one boy?  "You are the patient one," I said, "managing thirty students.  I have only one."
"I only have twenty," she replied.  Twenty.  I have one, that I love like he is my own.  Oh, wait, he is.

I used to say that homeschooling was an act of faith, because you wouldn't know if you'd done a good job until they were beyond your influence, and then, it was too late.  You had to keep going with no reassurance that you were doing it right and with no one outside the family to blame.  I can report back that the two that are "finished" are the most educated and lifetime learners of most all people I know.  Aside from that, they are strong in family values, love with their whole hearts and are good people. Both graduated with honors from college.  So, as you see the Jerry Springer stories pop up on the news feed, remember that they are feeding you this for the drama.  

  • Dear Mrs. Cardinal, building your nest in a low lying burning bush outside of the window where my cats perch inside on their cat tree?  Not a good idea.
  • Lots of people are getting chickens these days.  Been there, done that.
  • The house on the corner sold.  There are four feral cats in the barn that the Humane Society and I have been feeding for two and one half years.  They want them gone.  Yesterday.  

Friday, May 22, 2015

I Don't Think I Signed Up for This Time Slot

"I just want to be like everyone else!" he emoted.  That is, like everyone else that has an iPhone (preferably 5 or higher) and plays Halo.  Not as in "I have diabetes and want to be like everyone else".  It was a bittersweet moment.  He did not see diabetes as keeping him from being "normal", rather he lamented that  he had (I quote) "smart parents" that are aware of the leading research on social media and violent video games.

Being like everyone else is doable, I said and picked up the phone. Who was I calling? Why, the public school of course because "everyone else" catches the 6:30 a.m. bus that rolls past our place and they go to school all day.  (Yes, we homeschoolers do sometimes use the "I'm going to send you off to school threat".)  You see, it's just that I don't understand.

Would you, I ask, play a game in which you grabbed kittens and twisted their necks until they snapped, killing them.  He turned his head, thinking.  Was this a trick question?  Of course not, he would not.  But yet, it is okay to play games in which you shoot people dead.  (See, it was a trick question.)

This haranguing of the parents over movie and video game ratings, over the usage in time of electronics, of not wanting to leave one's chair at least once an hour to stretch and blink one's eyelids, it goes on and on. The idea, I think, is that if he can keep it up long enough, he thinks he can wear us down. And you know?  He's right. Eventually, he will have Halo as he gets older, he will have an iPhone.  We're only buying time.

I sound desperately old as I tell him of my childhood where parents would have laughed to hear that you wanted them to pay monthly for a data plan, that you needed, oh desperately neeeeeeded certain things.   When my girls were young, I didn't let them watch Power Rangers, for goodness sakes, because they kicked people!  We didn't have cable and computers ran on disks.

Since there is no going back, we negotiate.  Boys are very good negotiators.  I'm thinking we might have a  lawyer in the family one day.

Wednesday, May 20, 2015

Are You Beeping Kidding Me?

My life is a bleeping alarm.  My car beeps at me:  Put on your seat belt NOW!  The refrigerator was designed by a madman.  The freezer door sags just enough that every bleeping time someone gets ice, it beeps:  "Door's not shut.  Ha ha ha!"  The waffle maker I have beeps continuously, not just to tell me it is hot, but for some reason all during the cooking of waffles, even though they aren't yet done.  The stove is pre-heated:   Beep-beep-beep-beep-beep.  Just to name a few, wire cutters and neutering are in order.

Add in diabetes technology.  Beep beep beep:  You must change your insulin pod tomorrow.  Next day:  (beeps) Today you must change your insulin pod.  Beeps: insulin level is getting low.  Beeps: insulin level is low.  And of course every bolus and temporary basal begins and ends with a high pitched beep. Beep:  Your CGM sensor needs to be changed soon.  Beeeeep:  Your sensor is now expired - CHANGE IT!  Sometimes, it's enough to drive me mad.

And then, there is the night that I praise God for beeps.  The night that I sit bolt upright hearing three successive beeps.  I look at my Pebble watch.  BG 67 going down.  Likely, a compression low, that is, he is laying on his transmitter that sends his blood glucose reading to the receiver.  Laying on it can prevent blood flow to the transmitter, the glucose in that region is "used up" and the transmitter now can't detect any in his blood. I get up with the intent of rolling him over, only to find that he's actually a bleeping 48.  My  hands shake knowing  it is a 48 and dropping, and I'm racing the drop.  

Pulling grape juice out of the dorm refrigerator by his bed, I try pouring some and quickly remember why grape juice is not a good idea when I spill some.  It stains.  Holding the cup to his lips, he's not awake and likely extra groggy being low.  He tightens his lips like a toddler and raises his chin in a "you can't make me" gesture.  Chocolate milk follows juice. He finally wakes. "Was I low?" In the next couple of hours, we fight the monster and win. I am grateful for beeping.  

Sunday, May 17, 2015

Laughter, the Best Medicine

Share a link to a new blog you've found or a new friend you've made.  

As soon as it arrived, I always looked up "Laughter, the Best Medicine" in the Reader's Digest. As a child I plagued my family reading the jokes aloud.  I loved it, though, when I found one that made someone laugh.  The sound of laughter has to be one of the sweetest in the world.  Well, unless you laugh like this.

Life is lighter with laughter and thanks to this Diabetes Blog Week, I found this blog that I look forward to sharing with William.  As I often tell him, you can't change what life throws your way, only how you react to it.  

Thanks for reading this week.  My blog goes way back, back before diabetes reared its ugly head. With momentum from this week, perhaps I can roll forward.

Thanks to Scott Benner of Arden's Day, on whose podcast I first heard about this challenge, and to Karen Graffeo of Bitter-Sweet Diabetes who had the idea to connect the diabetes community through blogging.

Saturday, May 16, 2015

The Best Dressed Mom

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)

My kids could instantly answer this question as it has become a family inside joke:  "What's that smell?"  The joke is at my expense, but lovingly.  More concerned about facilitating the activities of my children, running our mini-farm, and never a fashionista, often pressed for time, I have found myself in some embarrassing situations. 

Nothing says love like being on time to pick up your teenage daughter from an evening art class, but finding that in your haste to do chores, you have chicken sh*t all over your jacket.  Few things make your children more proud than horse poo on your shoes while touring a potential university.

How does this relate to Blogging Diabetes Week?  As parents of a child with diabetes, it is nearly universal that our first reaction is how could I have prevented this from happening and what did I do wrong?  We are assured that we did nothing wrong, that there is nothing to prevent it, and yet, we hear mixed messages as they continue to search for a cure.  It could have been triggered by a virus, our food sources and composition has changed, we are too anti-bacterial and anti-microbial in our search for cleanliness.  Our kids don't get dirty enough and play in dirt.  

At about age 5, William liked growing carrots
Dirt?  We had plenty of that.  Micro-organisms?  Check out our creek.  We've had chickens, dogs, cats, horses, rescued birds and small mammals, fish (not to mention fishing), hamsters, to name but a few.  We have gardened and even eaten a few bugs.  I think they need to keep searching.  

Friday, May 15, 2015

Foods on Friday

Today's assignment: Write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  

(Nothing written on this blog is intended to give medical advice or suggestions but is only our own personal account.  If you have medical questions, please consult your doctor.)

You really want to know?  This is not going to be an ideal day, I warn you in advance.  I try to fill my home with fresh made food, with food as close to nature as possible and as unprocessed as possible. One of William's favorite dishes is a cauliflower casserole.  Perhaps you should see a less perfect side of us. Today, I'm going to talk about two foods we don't eat often, but just coincided with today. (Really!)

One of the first things you hear on diagnosis is that the patient can eat anything anyone else can eat if they just bolus for it, which is both true and utterly simplistic.  This ignores that some foods will have you questioning your child in StuffMart, "Are you high again?" risking a report to CPS.  All carbohydrates are not created equal.  One of those foods that can be challenging is breakfast cereal.  

William would like to eat breakfast cereal often but it results in a very sudden, very steep rise in blood glucose.  This morning, he had slightly over a serving of Chocolate Cheerios with 1 cup of 2% milk.  He will only eat cereal if his BG is on the lower side.  It was 87 this morning.  He pre-bolused at 9:24 a.m., waited about 10 minutes and started eating.  I headed to the barn to feed our horses. Normally, as soon as I see the rise start, we add a temporary basal insulin rate of 50% for 1/2 hour to an hour, but I missed it.  I texted him and he put it on at this point, about forty minutes after eating.

BG 142 and double arrows up (quickly rising)

The temporary basal helps him with keeping the peak lower and he topped out at 180.  By three hours later and lunch time, he was down to 125, not too bad.  This seems to work for us.

For lunch, he made himself two "hockey pucks" (chicken patties) with spaghetti sauce and melted cheese on top, no buns.  For a side, he roasted broccoli with melted cheese. 

He is going to practice golf today and go to Tae Kwon Do practice, exercise affording the ability to hand a little more of a carb load for dinner.  Tonight will be pizza and a movie, a much anticipated treat for all parties.  Pizza has a bad reputation in the diabetes world.  Loaded with carbs and fat, it can be difficult to manage.  

For us, we've found that the two most popular delivery pizzas do not mix well with diabetes.  Sugar in the large crusts and high fat content make BGs hard to manage even by using the pump to extend the bolus, or deliver the insulin over a long period of time. Papa Murphy's pizza, however, doesn't seem to have the same effect.  We get loads of vegetables (and yes, pepperoni) on it, and pre-bolus. The insulin is set up to deliver 60% right away and 40% over the following two hours.  Though it may also require another correction to keep him out of the dreaded 200s (which is like getting caught in the doldrums), he can eat, at least at home, what seems to have become the national food of teenagers. 

Thursday, May 14, 2015


Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

In a word:  sleep.  Scott Benner of Arden's Day says that his post about how tired he sometimes looks has gotten the most hits.  Why do you think that is?  If you read around the DOC (Diabetes Online Community), sleep is a constant refrain among parents of children with T1D.  (I'm not going to post my no-sleep D-Parent photo, even for increased traffic.)

Sleepless nights.  Zombie days.  Sometimes, it feels like my brains are liquefying.  He goes low some nights because of exercise, because he's not growing today, because no reason.  And, I can't. go. back. to. sleep.  If I do, I might actually sleep and he might go low again.  I might miss it. So why, I was once reasonably asked, not give him carbs before bed, run him higher so that I can sleep?  Well, here's a secret:  once in a very great while, I will.  Not really high, mind you, but just a little higher. Sleep is so sweet. 

This is not something that I can, out of love, do long term.  I can't risk future complications by letting his blood glucose always be high at night. He won't feel good in the morning, and the day will follow suit.  On good nights, I can fine tune the basal rate and his BG is normal, as good as mine would be with a normal pancreas.  I take advantage of those nights to give him the best average BG and best possible chance for a long, normal lifespan.  I get more sleep, glancing at my Nightscout and going back to sleep.  The basal rates will be like the perfect idle setting on an engine.  And then, it isn't.  

One night, I got the brilliant idea that while waiting (treat, wait 15 minutes) I'd practice some yoga.  I made up that first pose, butt in the air, head on the ground.  Slept well in that pose on his rug.  A 3 a.m. check of Facebook shows I'm not alone, and I've messaged friends "You up?".  Like the Apostles, I fell asleep trying to pray. So cold sometimes, I'll just sneak back under the covers for just a moment....Nope.  Get up, trip over the dog.

The change I want seems impossible.  I want parents to sleep and not have to get up to tickle the bottom of their child's foot to see, to not put a hand to their abdomen.  I want them not to feel guilt because they missed the alarm and it got serious.  I want them to have the energy to get through their next day.  I want people who can't sleep one night to realize you are telling someone who will not sleep through the night until their child is an adult, and maybe not even then.  I want to sleep.

Addendum:  My first thought this morning was "oh, that was an incredibly selfish way to answer that question". Sleep is elusive and craved but the reason for the lack of it should be clear:  unchecked lows can result in emergencies and death.  Adolescents and teens often don't wake to a fire alarm, much less a low that makes you drowsy and unresponsive.  So, more to the point, I guess I would like a way to ensure that my son is safe at night.  The CGM helps but isn't fool-proof.  Neither am I.  But, it's the best we've got right now.


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