Tuesday, December 29, 2015

Smoke This

My husband held the palm sized device in his hand. It was a temperature gauge that bluetooths (that's a verb now, bluetooths) to his iPhone from his new smoker. Why couldn't I, he mused, bluetooth to some other device (for example, an Android phone) which would upload that to the web, download that data to my iPhone which was bluetoothed to my Pebble watch. In this way, he could monitor the temperature of the day-long smoking of meat from his desk at work, and presumably, issue orders to those at home (meaning moi) if coals burned too cool or too brightly.

His new toy
See what happens when you are exposed to Nightscout? It makes you think that you can fly data around the world and control your smoker from your desk or presumably, anywhere. And here's the thing: it could be done. Nightscout taught me that. It could be done, but I'd have to write the code for it. It might just be easier to go check the temperature myself.

Nightscout is a group of amazing people, gathered on Facebook with the motto, "We Are Not Waiting". Started before continuous glucose monitors had the ability to send blood glucose reading into the cloud, parents of children with Type 1 Diabetes got together and for no cost, shared code, websites, directions, time, energy, and support to many other parents trying to find a way to keep their children with T1D safe while sleeping or away from them. I have to say my association with them has been one of the most amazing and empowering experiences of my life.

Back to the smoker, husband has been very dedicated to his new project, even rising in the wee hours of the morning to check the coals. One night, William was having a low and I wandered downstairs to get some juice for him. I was startled when he sat up on the couch! So he can get up in the middle of the night in pursuit of the perfect brisket! We have been treated for about a week and a half to the most marvelous meats, but we are all needing a bit of rest from eating.

Diabetes notes:
Our first G5 continuous glucose monitor transmitter malfunctioned only one month into usage. It should last three months. Dexcom tech support was excellent, replacing the transmitters and the three sensors that it took for me to realize the transmitter was failing. Large gaps in data started occurring, and often at night which was the most troubling. We are back on board with a new transmitter and it seems to be going well.  To be honest, I miss the Nightscout data and rig, but my son, not at all. He much prefers just carrying around his iPhone. I still use Nightscout for my Pebble watch, displaying his BG on my wrist.

Homestead notes:
Perhaps I should get some stones, dam up the creek and make a pond? There has been enough rain for it.

Monday, December 28, 2015

Surprise!

I found out that I can totally hoodwink the guys in the family. They had absolutely no clue whatsoever. The surprise was complete and startling. Daughters, however, seem to be able to read thoughts and minds. Anna was not surprised. Well, I mean she was, but she wasn't.

Wanting to hone my lying skills, I asked her what I'd said or done. Perhaps it was when she overheard me on the phone telling Lauren in a sappy voice that we really were going to miss her at Christmas and we were so sorry she could not come until January or February. Maybe not even that, Anna said. Maybe, she just really very much wanted her sister for Christmas and was hoping it would come true.

The best presents are the ones you can't buy


Notes:
True story: I once picked up the phone to call my mom and she was on the other end already - calling me. The phone had not even had a chance to ring.

Diabetes Notes:
William's growth spurt (and resultant omnivore eating) has created a dilemma. An Omnipod insulin pod holds 200 ml of insulin which should last him two days. He's falling short by about 8 hours. Our pods prescription is based on two day usage so eventually, he could run out of pods. I don't normally restrict carbs for him, but I am going to calculate the number of carbs per day he can have to stretch out the pod for two days. If he wants more, he'll have to take a shot. The alternative is to switch to a tethered pump with tubing and higher capacity.

Cortisol: 
On a T1D parents forum, many people reported in that they've gained weight since their child's diagnosis. I didn't at first. Working retail and worry kept the pounds off. Since I've quit, it seems a few pounds found me again. One reason? Cortisol. It seems that lack of sleep and stress cause weight gain. I can exercise more and throw away the dag-nabbit Christmas cookies, but I can't always do much about sleep. I will in the coming year work on more naps. That's a good New Year's resolution! Here's to naps!

Saturday, December 26, 2015

Change


When I was a kid, things changed slowly. When new ideas or gadgets hit the market, you expected that major purchase or idea to last awhile. Bought a phone? Good for 20 years. My dad could keep a dryer running forever. Now, your cell phone is practically obsolete as you leave the store.


The silver lining to rapid change? My dad asked me if I thought there'd ever be a cure for William's Type 1 Diabetes. I said I did, and I mean it. With computers aiding data analysis, with lightening fast sharing of results and in communication, I have great faith that he will not live with this forever. It is why I walk for JDRF, fundraise for Faustman labs and read, read, read.

But thinking about the rapidity of change, or the lack of it when I was a kid, I started thinking of words you would not have heard if you grew up in my childhood
  • Put on your seat belt.
  • Are you wearing suntan lotion?
  • Where is the remote control?
  • Where is the phone? (on the wall, of course)
  • Where is your phone?
  • Are you downloading something?
  • The internet is slow today.
  • It's hot. Let's turn on the air.
  • Text me.
  • IM me.
  • Warm it up in the microwave.
  • Walmart
My era had a strong impact on language though. You still "hang up the phone" though it sure isn't as satisfying as slamming down a receiver. You still "roll up the windows" by pushing a button. We sometimes "nuke" our food, though we're a little more comfortable that the technology is safe.

What words do you hear now that would have had no meaning in your childhood? Can you think of any other words that are still used today but the technology or meaning has changed?

Thursday, December 17, 2015

Hope


https://cclou.org/wish-list/baskets-of-hope/


We can choose to allow hatred and fear eat at our very souls, or we can chose to bring hope to the world. We can listen to politicians tell us that we must turn away those seeking solace and safety, or we can open our arms and hearts.

There is risk in this. There are people that wish us harm in this world whether because of their religion, their politics, or perhaps just because there is something very wrong with them. I will not let that fear guide me. I have yet to find the Bible passage that tells me to take the safe route. 

I am an older woman who seemingly can't really make much of an impact on this world. I have no great wealth nor power, no outstanding talent or voice. It would be easy to fall into the apathy of not doing anything or saying anything because it would have no impact. What is my voice against a billionaire's? But there are thousands, no, hundreds of thousands of us with enough, more than enough riches - yes, to other countries, we have riches - and if each added her drop to the bucket, the bucket would fill. 

The program is called "Baskets of Hope" but I think the gift of hope is to the giver.


Monday, December 14, 2015

I'm Too Old For This

As my daughter said, it makes for a good story. Eyebrows certainly go up when I respond that I injured my hand on a BMX course. "Excuse me?" I know to them I'm an old woman; a small old woman. My bike had a fat, BMX-type tire and I didn't see the jutting rock on the trail. Over the handlebars I went. I'll spare you the photos of my injuries, which extend beyond my hand. The good news - no broken bones.

See those rocks? #Imtoooldforthis
How did I come to be on an underground BMX course? Groupon. It will be the death of me. I look on Groupon for places to take William and his friends. My goal is to keep him physically active. The Louisville MegaCavern frequently has different activities - zip lining (BTDT), ropes course (BTDT), Christmas lights (BTDT). So this was intriguing.

Carved from beneath the Louisville Zoo and a now defunct KMart, I envisioned some big jumps, yes, but perhaps small swells for pleasant riding for the newly initiated. No. The only other people there were two adult BMX racers who declared that this course was harder than BMX race courses.

Why was I there? Spectators are verboten. You must have a bike to be on the course. I said that I was there to assist my son with Type 1 Diabetes. The manager assured me that they had a Gator and if they found him passed out, they'd bring him to me in the room where I could wait.

"Excuse me," I said, "I usually try to treat him BEFORE he passes out."
"No sorry, can't do," she says. "Insurance," she says.
I wonder what the insurance people might say if he passed out on the course and they didn't see him on their monitors (I saw them not watching).
"I'm sure you don't have someone who is trained to administer glucagon."
"HOW DO YOU KNOW??" - she says (nastily).
"Okay, you're right. Do you?"
"Well, we have people trained in first aid.  And we can call EMS." and "We've had people here with autism."

It was all downhill (excuse the pun) from there. There was no making her understand.  I got on the bike. My second reason for going was to make sure that the hills didn't bring out bravado and end in broken bones. The boys started out wisely and built up their abilities. It seems I was worrying over the wrong bones.

The three amigos
In the end, I found that the CGM and cell phones did not work at all underground. William experienced only one low later in the ride, which he felt rather than was alerted to by technology. The boys came home with only a few scratches, conquered their initial trepidations, and had a good time. The good news for me is that though I am old, my bones aren't that easy to break.

Saturday, December 05, 2015

Rabbit Holes

Do wooly worms predict the severity of winter? In search of the truth, William and I watched videos online about the species. We've found several in our walk-out basement (which, to me, predict that it is currently cold outside). The video taught us that the "hairs" on the wooly worm allow it to freeze more slowly and with cryogenic properties, it can winter outside and not in my basement, become frozen, and be revived in the warmer spring days to become a moth.


Drawing more out the lesson, I asked if he knew the root word, "cryo" (cold) and the uses of cryogenics. Always interested in the bizarre, he became intrigued with the idea of someone with a disease being frozen and revived after a cure was found. But then, of course, 100 years from now the world would be different and most people you know now would be gone. 

We did a bit of internet research and found that in some cases, only the brain is frozen. Presumably, the owner of the brain is hoping that brain transplantation will become possible and they will be able to find a donor body in the future. This discussion segued into space travel and distances and eventually tapered off.

The ideas continued to swim around in my head. What were the ethics and implications of brain transplantation? I asked my elderly father, mostly wheel-chair bound, if it were possible for his brain to be transplanted into the body of a healthy twenty year old woman, would he do it? No way, he said. I pushed - so if you knew you were dying, you'd rather die than be a twenty year old woman with your own brain, but another full life ahead of you? No, he'd rather not. Women, he said, have to put up with too much from men and he had no desire to try to live as a woman. I've asked several people this question and the answers are very enlightening. Would you do it?

Sometimes, I have the experience of an new idea coming up several times in a short time span. I have never thought much about brain transplants but in the book I'm reading, Stiff: The Curious Lives of Human Cadavers, Mary Roach discusses this very subject just when I was contemplating it! (And yes, I read and think about weird things. Sue me.) In it, she discusses that medically, it probably can be done but it hasn't been pursued because of the many problems it raises. One is that a donor body can supply many donated organs and save several lives, where as a brain transplant saves only one and would be available to only the very wealthy. (My medical insurance harasses me over insulin pumps. Imagine if I asked for a whole new body!)

Notes:
The wooly worms I've seen are mostly brown.

It is 29 degrees outside. William and I are collecting blankets for the homeless to be given out at Christmas. We've collectd 187 so far. I'm thinking Christmas cannot come soon enough for those that won't come in to the shelters.

Friday, November 20, 2015

Phone Ettiquette

I felt about two inches tall. It has been a long time since I've been chastised by a nun, and even in those days of elementary school, very rarely. She shook her head and looked at the back where I was sitting, my cell phone in my hand. "We will have to revise our cell phone policies to make them more clear." She wanted undivided attention to her talk on the history of the beautiful mother-ship we were visiting with an eight grade religious education class.

Protestations arose in me: "I'm using a medical device here!" I wanted to shout. Instead, I pocketed it until I slid out of her radar. Normally, this would not have happened. The iPhone receives from the "cloud" data on William's blood glucose levels. I have my iPhone paired with a Pebble watch and under many circumstances, have a continuous readout of William's blood glucose on my wrist available at a glance. This Church, however, was built to withstand a nuclear or radio wave attack, and I was getting no data on my Dexcom Share app (which needs cell phone coverage to run), and in turn, the watch also showed "NO DATA". As a chaperone, I sat down in the back, taking the opportunity to see if I could get it working again. William's BG will often drop low when casually walking around.



Her irritation with iPhones is justified, yet it made me aware of the disadvantage of using the iPhone as our receiver for CGM (continuous glucose monitor) data readouts. People will likely think we are checking our Facebook or Twitter feeds or texting friends. How dare we pull out our phone in a meeting? Even when I glance at my watch, it appears I'm checking the time, an "are we done yet?" sign. I wonder how many times I have said, "No, I'm just looking at his BG, we're good!"?

Though I tried to shake it off ("she has too much starch in her drawers"), I was raised to be the good little Catholic elementary school kid. It did make me think more about the use of iPhones as medical devices, though, and the need to educate the public that sometimes, they are a lifesaving tool.

Notes:
We have the Dexcom G5 transmitters now for continuous glucose monitoring, and William is anxious to change over from his current system. The G5 eliminates the need for him to carry anything other than his iPhone. He no longer has to carry a small receiver every where he goes. You might think what is one small receiver? Well, when he leaves the house, he currently has to count nine things which must be in his bag and must go with him everywhere. If he is outside, he used to have to have his iPhone in one pocket, Dexcom receiver in the other. And, remember to bring them. I know to you that sounds like not much, but to a 13 year old boy, having to remember to get both pieces to just go outside to shoot some baskets - big deal. I do my best to stay right on top of the best technology, so here we go. I hope we like it.

Thursday, November 19, 2015

Slip Sliding Away

There I sat in the Walmart parking lot, wondering what I was going to do. I really, really needed chili powder. The chili was already in the pot and simmering back at home sans chili powder which really makes it not chili but meat and bean soup. Sure, I should have checked for the main ingredient before starting. Perhaps it is because I'm perpetually tired or maybe because I'm getting old. Probably just not organized enough.

How could I still go in? I had no choice really, it was close to dinner time and though I live only two miles from the store, at this hour it takes twenty minutes to traverse and that's if there is no train which, in the infinite wisdom of the town's forefathers, runs down Main Street with no quick way around it. 

My sandal had broken when I twisted my ankle getting out of the car. If you are my age, you might have said my "thong" had broken. In my growing up years, we always called them thongs - a slip-on sandal that had a strap between the toes.  I'm not sure when the word was usurped to mean a naughty pair of underwear, but I had to school myself to not use the word again. After all, if I told you that I could not go into Walmart because my thong had broken, well, I don't even want to put the image in your head given my age. And, after all, who could see? But clearly, my "flip-flop" was broken and and had no spare. I could not go in barefoot, could I?

I found a piece of old gum in my little trash container and stuck it on the shoe, shoving the strap down into it. My foot held the gum in place. This did not work at all, but I found that if I shuffled this foot forward, like a teenager in (appropriately named) "slides", I could use the band across the top to keep the shoe on. So, in I went, step, slide, step, slide. I pretended I was someone with a foot injury and should I encounter an acquaintance, planned to claim I'd stepped on a nail.

Fortunately, I did not see anyone and quickly grabbed the big $9 plastic container of chili powder, determined to not run out again. The minute I got home, the shoes went in the trash. The chili, however, was a success.





Friday, November 06, 2015

What's That Smell?

All families have stories about other family members that they retell. Since I won't be able to write today, I thought I'd re-post a story that likely will be recounted long after I'm gone. 

Published April 08, 2009

It was 9:12 p.m. last night, two minutes past the time I must leave to pick Anna up from art exactly at 9:30 if I don't get behind someone going well under the speed limit. Still, I took time to go to the big chicken coop, fearing that the raccoons might strike. Before shutting the door, I reached over as is my custom to feel the backs of each one, counting them in the dark and training them to be accustomed to my touch. Each gave a "bawk!" and I closed the door.

Returning to the car, I wasn't five feet up the driveway before the smell hit, an overpowering, nasal opening odor. I must have stepped in "it". Or, could it be the dogs, as I had two of them with me. Did they have an accident? No matter, I could not be late, and I decided to just drive and figure it out once I reached the art studio twenty minutes away.

As I drove, the smell became overpowering and I thought that Anna was going to object highly to to the smell in the car. While still driving, I slipped off one shoe, and then the other, smelling each to see if it was the offender. Perhaps I could drive home barefoot, tying the shoes to the roof of the car or something. I could not throw them out - my beloved "cow pie" shoes. But, it wasn't my shoes. The smell, I had decided, however, was distinctly chicken sh@t.

Shrugging, I inched down the windows, but it was so cold outside, I was obliged to also turn on the heat. The fan blowing the heat also blew up the offending smell, so turning off the heat, I shivered the remaining miles.

Arriving at the studio, I stepped inside to tell Anna I was there. "Uh, MOM!" she said pointing at my knit jacket. I looked down and saw that I was covered in chicken crap. Down my front and along my sleeve, I had a nice, green chicken "cow pie". Evidently, when reaching into the coop, and being short of stature, that isn't all that easy, I had rubbed against the door where a chicken had sat and shat.

Quickly, I unzipped the jacket, balled it up, and stuck it near the door for retrieval as I left. I had a pleasant conversation as usual with the ladies there, and we left.

Once in the car, Anna and I started laughing. Very grateful I was that she saw it before anyone else. I told her I could hear her instructor coming out and in her Georgia drawl wondering "what is that smell"? Anna began to laugh that hysterical beyond funny tearful laugh as she pictured her mother coming into the studio covered in chicken crap and being found out by the ladies there. Because she is soon to get her driving permit, I was thankful she didn't have it yet given that she could not stop laughing which might have impaired her driving.

I guess I'll never get the "best dressed mother" of the year award, or even the "doesn't really smell that bad" award. I supposed this is one of the stories that will go in the "remember when mom....." book.

Thursday, November 05, 2015

The Pebblebee

Organization is not my strong suit. I'm a "piler". I have piles of things. Oh, I generally know where stuff is, as long as no one messes with my piles. Ironically, I've been "accused" (complimented?) of being organized by people that have clearly never visited my house. Perhaps they heard me talk about a great new idea I had for organization that I had one day (and discarded as too much effort).

Type 1 Diabetes, though, well, that requires that I become more organized at least concerning diabetes things. I do have it in me, it just doesn't come naturally. See, T1D requires a lot of "stuff" and all that stuff has to go everywhere that person with T1D goes. Some of that stuff is VERY expensive cutting edge technology. Losing these things would be disastrous.

Before those of you with no T1D connection tune out (yawn - "she's talkin' about di-uh-BEE-tus again), listen in. I'm going to tell you about a product that everyone should have. And, by the way, I am in no way connected to the company nor receive anything from the company to review this product.

Pebblebee Honey is a small disc that can be attached to anything you don't want to lose. I have attached one to William's continuous glucose monitor (CGM), and one to his remote control for his pump (PDM). It uses bluetooth technology to communicate location to an iPhone. Using the Pebblebee app, he can locate the misplaced device by causing it to either chirp a sound, or by flashing a light. The display shows if you are getting closer or farther away. Should it have been left somewhere (agh!!!), it will tell you the last place you and the Pebblebee were in the same place. Those of you with a pancreas, you could attach one to your keys or your purse instead of an insulin pump.

Connected with a key ring to the CGM

Hidden behind the PDM in the silicone "skin"

Why the Pebblebee and not the Tile? The Pebblebee is $25 each but lasts 2 years. The Tile is reported to last one year. At the end of two years, you can replace the battery on the Pebblebee for a low cost and continue to use it. The Tile, on the other hand, must be discarded and a new one purchased each year. So, it has a slightly higher up front cost but long term, a better value. 

We do have a procedure for not losing these devices: he is always to return them to a basket that holds his supplies while at home or to his backpack when he is away. Yet, sometimes, he'll forget or take the CGM outside with him or lay it down while doing something. Gone are the "well, where were you when you last saw it?" questions, replaced with "use your app and find it".

Notes:
The word "pebble" seems to keep popping up. I wear a Pebble Smartwatch to monitor his BG.


Recently, while reading The Story of Science by Hakim to William, she writes that the Latin word for pebble is "calculi". So the words calculate and calculus came from the root for pebble.  Until numbers were widely used, pebbles were.

I heard coyotes last night. In. Our. Yard. I went outside to gather the cats in and worried over my horses. Using a flashlight, I walked up the dark driveway. I convinced myself that the rustling noises in the woods at the fence line were deer. I didn't see anything and heard no more, but was relieved to see my horses unharmed this morning. Glad I don't have chickens anymore.

Wednesday, November 04, 2015

Bearly Making It

It's safe to say that I'll not ever get William to sleep in a tent again, and getting him to hike with me might even be more of a challenge than it already is. In an effort to show him how books can be funny and wildly interesting, I've been reading aloud "A Walk in the Woods" by Bill Bryson. Chapter 2 is about bears.

For some unknown reason, William has always had a concern about bears. I've assured him that Kentucky has almost no bears and sightings are very rare. This proclamation was ruined several years ago when he, my sister, nephew, and I booked a cabin near the Red River Gorge. All the trails were closed because - you guessed it - a bear was sighted. See? We do have bears.

The chapter on bears (thank you Mr. Bryson) did nothing to assuage his fears. The book has a few words probably not appropriate to but very interesting to a middle schooler:

What on earth would I do if four bears came into my camp? Why, I would die, of course. Literally shit myself lifeless. I would blow my sphincter out my backside like one of those unrolling paper streamers you get at a children's parties - I daresay it would even give a merry toot - and bleed to a messy death in my sleeping bag.

After I explained what a sphincter is, he laughed for several minutes after this passage. He begged that I continue reading, and although I think in part out of interest, read aloud time is also a delay in other school work.

While reading to him, I had my iPhone timer checking the ribs I was cooking for dinner: sear for 6 minutes on the grill each side.



I guess we are having pizza for dinner. Luckily, I don't expect the charred meat to attract Ursus americanus.

Notes:
Trying to stay on the edge of technology, I have ordered the Dexcom G5 continuous glucose monitor. The upgrade means the transmitter will bluetooth directly to his iPhone with no need for an extra device to capture the data. One less thing to carry is good. Diabetes requires lots of "things" to carry around.

Friday, October 30, 2015

The Elephant in the Room



I remember it was a beautiful day, warm and sunny, the last days of summer. It was also the last day of life as we knew it. We were fearless and completely ignorant of what the next day would bring.

"Before" at Big Bone Lick State Park - the photo of a very sick (undiagnosed) little boy

And yet this year, it was a week before I realized that the two year anniversary had passed unnoticed. It's not that the elephant is no longer in the room. It surely is. It raises a loud trumpet every single day, sometimes moment, of our lives, but we've moved into a new stage of experience and the non-D part of our life has moved to the forefront.

I read posts by parents in online forums and you can smell the fear. I remember it. I remember thinking I gave the wrong dose, my hands shaking as I called the endocrinologist at 1 a.m. for reassurance on more than one occasion. I remember being so sleep deprived that I accidentally increased his basal insulin instead of decreasing it, causing his blood glucose to go even lower. I remember how I would feel ice water in my veins when I saw a number in the 50s.  I remember raw emotions that over-reacted.

William has asked me what I thought the day he was diagnosed. There was no fear. I didn't know enough. I knew enough to know the symptoms but not what life would become. I was in the stage of unconscious incompetence - I didn't know what I didn't know.



Maslow's Four Stages of Competence


Then, we got home from the hospital with our box of supplies and I realized - I don't know shit! I pledged to William that no one would work harder than I would to learn about this disease, but my reading and study, though necessary, highlighted my Conscious Incompetence: I knew what I needed to know and do but not enough experience to handle it. Fear kept me from making, as Scott Benner puts it, "bold" decisions. In fact, at first, I was mad at Scott for advocating to be bold with insulin (another blog post coming) through his podcast. But, he was right.

What makes this disease so hard is that the only way to rid myself of fear was to take risks, to make mistakes and forgive William and myself for them, to be bold, to work hard. Experience will move one to Conscious Competence: diabetes will never get better but you'll get better at managing it. There are days when we dip in and out of Unconscious Competence, where moving through our day we add temporary basals on the fly, throw in a unit or two of insulin, oops too much here's juice, "okay, whatever". (Double arrows down still give me a heart attack so I'm not a ninja yet.) It feels a lot like flying, diving, dipping, taking currents around obstacles. But don't for a second congratulate me. I can't ever turn my back on that elephant. Although humans have sometimes learned to manage them in captivity, they've been known to kill.


Disclaimer: This blog is about our love of learning, and more recently, also about my son's diagnosis and life with Type 1 Diabetes. It is in no way intended as advice, medical or otherwise. Consult your own doctor if you have questions about your medical care.

Wednesday, September 16, 2015

Where are you, Abi?

His eyes were hazed and unfocused.  Clearly, mental illness, drug addiction, or alcoholism had him in its grips. My "job" at the soup kitchen that day was to go around with pitchers and refill drinks. Each time I passed him, he waved me over.  "Come here," he said in a thick African accent, smiling broadly. Each time, he quietly said something. He wanted more spaghetti. I have pretty eyes, a nice smile. He wanted a hug. I hesitated briefly. He was none too clean. I asked his name.  Abi (aa-BEE).

Later, he got up to leave and came back to our drink station. He put his arm around me and said to someone, I don't remember who, that I was now his sister. He walked out into the world where he lived, on the streets. I think of him often: how he came here, why he was on the streets, did he have family? Of all the people I encountered that day, his openness, his insistence on interacting with me burned him in my memory.

One other client struck me hard. A young girl sat quietly eating her lunch.  At her side, was a stroller holding, I'm guessing, her three month old brother. Her five year old sister sat across from her, her backpack still strapped on. Where were their parents? Who leave a three month old with a girl looking to be no more than eleven years old? Who sends children to eat a soup kitchen filled with (mostly) homeless men? I wanted to take them home. What happens to that baby when the two older ones started school this fall?

As I poured, I made sure to look directly at the lunch goers and smile. All were polite, thankful, grateful for a smile and direct look.

"Where'd you get that swab?" I was asked.  What? What is a swab? Familiar with swag but not swab. He touched his head, "Swab. Cap." I was wearing a white ball cap that was a Junior PGA Golf hat, taken from William. I'd have given it to him but I had to keep my hair covered.

One man went around asking all the workers for a rag. He wanted only some clean, dry cloth to clean himself. Imagine: no wash cloth to wipe your face. Something so very basic we take for granted. Just those couple of hours really have dug at me. At night, I look up at the stars and the night sky. Winter is coming. Where will they all go? How will they stay warm? Yes, I know the woman with the scarred face doesn't really have allergies (as she told the kids) but is a meth user. Yes, I know a good number made bad choices and that some, like in the general public, aren't good people. Nowhere have I read that we are called to serve the "worthy" only. Mostly, I saw people that wanted someone to really see them and smile.

My "brother" is out there somewhere. He needs a blanket for the winter. William and I are going to try to collect enough blankets to give each person served there, up to 500 people, a blanket for Christmas. It should be a good Christmas!

Thursday, September 10, 2015

Up Close and Personal

Did you ever wonder why people get crankier (okay, why I am getting crankier) as we age?  Why is there a perpetual frown on our faces and downward draw one the mouth?  Why do we have two creases  right at the top of our noses? It's because we CAN'T SEE! We're all squinting at every label to make sure we read the right dose on all the medications and vitamins we need to keep the engine running.

What possible evolutionary reason would God have to make us lose our up-close eyesight as we age? It seems only to disadvantage.  Then it came to me...so I can't see the wrinkles in the mirror!   Yes, that's it!  Without my glasses, I look just as good as I did decades ago.  Stray hair on the chin?  Isn't there.  Wrinkled eyes? Smooth up close! From a distance, I do okay but up close....


There is nothing more aggravating than not being able to read without finding where I put my glasses. If I don't put in contacts for myopia, I can read without them but then I'm touchy because I can't see facial expressions and far away. If I put in contacts, I can't read up close. My eyes are messed up enough I can't use the new bifocal ones. I guess "it could be worse".

Wednesday, September 09, 2015

It Could Be Worse

In online forums, parents of children diagnosed with Type 1 Diabetes sometimes bristle at comments they've received to the effect of "It could be worse.  He/she could have (fill in the blank - usually with the word cancer)".  Most parents of children with diabetes intellectually agree with that statement.  In fact, if you read more in those online forums, you will come across posts from parents that write about encountering someone with a difficult diagnosis and that it gave them pause. But with raw emotions and grief at diagnosis, many rant at being told, "It could be worse".

Why that reaction?  It's the truth.  It could always be worse.  There are children with multiple diseases.  My sister, for example, is a specialist pediatric nurse for children with cystic fibrosis. Some of those children have multiple diseases, including Type 1 Diabetes. Additionally, their life expectancy is much shortened.  But, and here's the crux of it:  Just because another person has greater pain or a worse condition does not make the pain in front of you mean less or that you can't give support.

But, we, as a culture, don't practice enough learning the right things to say or how to listen. Most people faced with a chronic disease just wants someone to acknowledge the pain and difficulty. That's all. They don't want to hear about your great aunt that lost both her legs (to Type 2 which is a different disease altogether), about your cousin's friend's boyfriend that died from Type 1, about your pet that has it. They want you to hear them, see them. Understand. 

A common thread is, "You won't understand life with T1D is until you live it". I recently spent a week with that sister and she said she didn't know what I have to do, how hard it is until she saw it. She lived with it. And do you know? That made me feel so validated that she gets it. Nothing cheers a person up more than, "it could be worse!" Gee, thanks, what's next as if this isn't enough? I so appreciate your reminder because I couldn't have thought of that myself. 

If I could take away T1D from our lives, I would. I would, in fact, accept it as my own disease and spare my son. Since that isn't possible, I do have to look for any silver linings. It is making us better people. I probably have been guilty of saying the wrong things at times and not listening enough. If you experienced this, I apologize - and am doing better at that, I think. 

Notes:
Who the bleep decided we would no longer double space after a period when typing? Do you know how difficult it is to break that habit? Two spaces messes up the formatting on Blogger.


Sunday, July 12, 2015

Semantics

Maybe we've got the wrong word. Those of us in the DOC (Diabetic Online Community) often discuss the promise of a "cure". A supporter of JDRF, our family walks for a "cure". Don't get me wrong, my beautiful young man needs that cure, and in its absence for now, better and better technology to manage a life threatening disease.  You don't know how desperately I want that cure for him. But I also desperately want that no one else joins our "club".

As in a lot of medicine, treating the symptoms and the disease after the fact is standard. Our walks, our drives, our focus needs to be on prevention and causation. Though getting the word out about the symptoms and recognizing Type 1 Diabetes is critical, preventing it from happening in the first place is paramount.

Yesterday, a beautiful family lost their only daughter. Diagnosis of T1D came only after her brain had begun to swell causing irreparable damage. The doctor thought she had had a virus. Though she and her parents fought hard and well, supported and followed by thousands, she lost that fight, a fight she should never have had to fight if we knew what caused T1D. We need a cure, but we also need eradication.

Think that the medical community will know if someone presents with T1D?  Think again.  Many older patients will be thought to have Type 2 Diabetes by doctors and sent home with T2D medications, not life saving insulin.  Just this week, I read on Facebook about a mom whose 23 year old presenting with excessive thirst, frequent urination, and blood glucose that read "HIGH", was sent home with a T2D diagnosis and she wrote about it on a T1D Facebook page.  T1D moms urged her to fight back - T1D presents with sudden symptoms, T2D more slowly.  Surely, her son was T1D (though we were sad to say).  She pushed, and got T1D diagnosis, though the doctors did not at first agree.  T1D is an urgent situation.

Younger children will be thought to have a virus or flu.  Two other posts today, one of a four year old in a similar situation to poor Kycie, brain swelling, unresponsive. One of another small child who lost the battle.

Until the day that they can find that cause, it is critical that parents and pediatricians are on the alert for T1D.  Though still considered rare, it takes less than 50 cents to test at each sick visit.  Fifty cents that could save someone's life. Tell those you know with young children to either buy their own meter or demand a quick blood draw at sick visits. It is that important.

Update:  Today, a 4 year old boy died of undiagnosed T1D.  He was sent home because they thought he had a virus.  By Friday, he was in critical condition.  He died today.  It didn't have to happen.  A fifty cent blood test and these two beautiful children would still be here.

Thursday, July 09, 2015

Gluten Free Bread

One of the first questions asked at the hospital during William's diagnosis for Type 1 Diabetes was if there was a history of celiac disease in our family.  While there is not, there is a history of autoimmune diseases including IBS, skin, and thyroid disorders. (T1D diagnosis was, however, out of the blue.) The doctor indicated that some studies show a link between autoimmune diseases, inflammation in the gut, perhaps the microbe population there, and some environmental trigger.

We pursued genetic, vitamin level, and food allergen testing for several family members. One of the outcomes was the recommendation to go gluten-free. (Because dealing with Type 1 Diabetes isn't challenging enough.) Yes, I know many consider it a fad diet.  We have empirical data, however, in our family that the diet does help with headaches and other symptoms.  With markers for thyroid disease but not yet having it, my goal for William is also to prevent more autoimmune diseases from developing. It is not unheard of for those with T1D to develop additional autoimmune diseases.

But What About Bread?

My son loves bread, and was not happy about giving it up.  I went in search of a recipe that would appease him during the six month gluten-free, and to up the ante, casein (dairy)-free, trial.  My first few attempts were miserable.  The results were spongy, tacky, fell while cooling, and dense.  After a while, I came up with a recipe based on the Namaste recipe, but a bit changed in technique and a few ingredients.  Below is the recipe, which while it is a little different from wheat bread, is soft and delicious. It contains no milk products. The best price I have found for the flour mix is at Costco, where a five pound bag is about $9 and will make about 4-5 loaves. Compare this with off the shelf, prepared loaves at the grocery that taste dry and powdery for as much as $7 a loaf.


Cathy's Gluten Free Bread

Yeast mixture:
1 tablespoon yeast
1/4 cup warm water

Wet Ingredients:
3 eggs, room temperature
1.5 cups water, warm 
1 tablespoon vinegar
2 tablespoons olive oil
2 tablespoons honey

Dry Ingredients:
3.5 cups Namaste Gluten-Free Flour Blend
1/2 cup cornstarch
1 teaspoon salt
1 tablespoon chia seeds
2 tablespoons ground flax seed

Directions:
  1. Mix yeast in 1/4 cup of warm water for 5-10 minutes.  It should be bubbling after that time.
  2. Mix remaining wet ingredients in a stand (like KitchenAid) mixer with the egg beater attachment.  I mix well until very foamy.  
  3. While your wet ingredients mix, stir together your dry ingredients in a separate bowl.
  4. Add the yeast mixture to your wet mix.  
  5. Add about half of the dry flour ingredients to the wet mix.  Allow to thoroughly combine.
  6. Change the attachment to the bread hook if you have one. Add remaining dry mix.  Mix on medium-high speed for eight minutes.  (This is a change from the original recipe.  I found another recipe that said thorough mixing is very important.)
  7. Prepare your pan: You need a bread pan with fairly high sides.  Coat the inside with olive oil. It is even okay to have a little extra oil in there.  
  8. Pour in the batter.  It will be the consistency of mashed potatoes and will be sticky.  
  9. Wet your fingers and gently guide the dough to the corners of the pan and even out.  Wet fingers as needed to not stick, but don't want to add too much water.  Do not push down or compress.  When it is somewhat where you want it, add a bit of olive oil to the top and continue to smooth the dough.  
  10. Let sit 30 minutes uncovered.  It will start to rise above the pan, and if you start seeing a little crack here and there, it is ready to bake in a pre-heated 350 degree oven.
  11. Bake for 30 minutes uncovered.  After 30 minutes, cover loosely with aluminum foil and bake an additional 30 minutes.  Although difficult to wait, let it cool in the pan a bit before removing (it needs the support of the pan or may fall) and before cutting.  It still may sink a little, but by waiting, it will reduce the amount.  
  12. I recommend mixing one loaf at a time, though of course you can measure out the ingredients for two loaves at the same time.  
That's it! If you see any errors or have questions, shoot them my way.  I want to continue to improve this online version of my recipe.

Wednesday, June 17, 2015

Making the Grade

At the end of the semester, I received my report card and was incensed.  My high school math teacher had given me a 99% in Geometry.  I had not missed one question on any homework or any test all year.  I had the papers to prove that I had 100% and offered to show them to her.  Her response?  She had to give me a 99% because I could not possibly know everything there was to know about Geometry.  My response was that I knew 100% of everything she had taught.  Being a powerless student, I had to accept defeat, but she knew I knew.  I still know, and if I could only remember her name....

Funny, here I am in my 50s and I still remember that and feel slighted. But my grades, that was a way to prove that I knew the material, and a comparison to others of how I was doing.  Silly really, because I loved Geometry and knew that I had learned the material.  I didn't need a teacher to tell me.  Intrinsic learning or learning for the joy of it was there, but I was raised in a graded culture and I wanted that proof that I knew my stuff.  

But what if students didn't get grades but learned as part of life?  What if knowing you were growing and learning was enough?  Would you be willing to send your child to a school that didn't grade? It is possible to be schooled through high school without grading in comparison to other students and to go on to and graduate from college.  My two daughters did it.

The A1C test, the average blood glucose over the past three months, is a number held as a type of grade of BG control by doctors, parents, and patients alike.  Every three months we present our devices, the office downloads the data, and looks at the A1C, our report card.  But, it tells such a limited story and is held up for admiration or hidden from others in fear of judgement,   It is shown as a badge by some - "Look, I've reduced my (child's) A1C. Look how low it is.  Look at the good job I'm doing".  Why do we feel the need to compare ourselves to others?  We are all doing the best we can day by day.   We know how we are doing.  I am shooting for near normal BG for my son, and some days, I don't get close.  I try again tomorrow.  

In the book, Sugar Surfing, Dr. Ponder talks about his early management of T1D and that instead of a number, there was a color chart, each color signifying a range of A1C.  I wonder if that wasn't a healthier way to communicate control.  Obsessing over 0.2 or 0.4% change when there is a range of error permitted of 0.5%? Reigning in the competitiveness by saying you're somewhere in the blue might be more supportive.

I'll admit that ditching a grading system would be hard for me.  I know that the standard deviation, the range of numbers, is as important if not more so than the A1C. Yet, I know that when I go to the doctor, I'll wait nervously for that number, unable to shake that feeling that it will define our dedication.  I'm still waiting for that 100%.  

Notes:  I will never adjust to the need for one space after the period.  I learned on a typewriter from a book in the dark ages.  (Monks sat next to me hand lettering.)  Now, I must go back to adjust spacing each time publish a blog because I put in two spaces where there should be one. It is automatic.

A fluffy, mangy, red cat is hanging out in our barn.  Anna says he looks too thin.  I can't catch him. Don't want another cat, don't want him to starve.  

Sugar Surfing

It's a bit like flying to me, or maybe riding a roller coaster. The difference is that every once in awhile, someone switches the track without telling you.  Your body is leaning the left but you go right.  Sometimes, the roller coaster stalls at the top of the hill, doesn't move and you just sit there, a little nervous for hours, wondering how the employees are going to get you down.  Sometimes, if you are paying close attention, maybe sitting near the front, you see it coming and can adjust.  On good days, you go up and down, moving with the train. Gliding.

A Continuous Glucose Monitor (CGM) helps us see those track changes coming.  We still have a few highs and lows, but less, and with more control.  Over the past few weeks, his BG averages a normal, non-T1D blood sugar.  We were already employing some of the methods described in Dr. Stephen Ponder's new book, "Sugar Surfing", describing using a CGM to attain better BG control but this book answered many of the questions I had and gave me more confidence to add insulin in to ward off a track change or worse, jumping off the track altogether.



Throwing away the fear is the most difficult part of parenting and treating a child with T1D. There is the certain knowledge that you are giving a drug that can seriously harm if not kill them.  I have been hearing people in the DOC (Diabetic Online Community), reading blogs like Arden's Day and SixUntilMe, and hearing the message, "Be Not Afraid". You hear many scary stories, many and it does happen.  More frequently, many T1D live long and productive lives and focusing there seems more psychologically healthy.

This book, while we wait for the ride to end with a cure, shows how to move from a static management of T1D to a more dynamic management.  I've heard of medical professionals say that such focus isn't healthy, that one has to "live one's life".  I don't think we look at our CGM any more than people today check their cell phones, probably less.  And, William is paying more attention, making more decisions, and becoming more confident in those decisions.  "I'm just surfing, Mom," he'll say.  The only caution I have is that at his adolescent age, his mind often loses focus and he forgets to check or correct.  That's where I come in.

BUY THIS BOOK!

Yesterday, I wrote that this book not only made me think differently about diabetes management, but also about how we grade and categorize starting early in childhood.  Because this post is getting long, and William is at BG 81 and great time for breakfast, I'm putting that thought off until tomorrow.

Note:  I know some insurance and Medicaid doesn't cover CGMs.  This needs to change.  They'll pay for those little blue pills but a device that keeps your child safe at night, reduces long term complications, no way.  Not medically necessary.  Makes me want to become a CGM lobby!

Monday, June 15, 2015

Making the Grade

"The measure of intelligence is the ability to change." - Albert Einstein


School taught me early on that grades were the pinnacle, the utmost important goal in that phase of my life.  Somewhere along my education, my self-esteem was woven tightly with my grade point average.  My intellect was judged with a letter.  Education was not just learning, it was a competition, it was proof that I had worked hard, and it was status.  In college, bell curves determined not what I learned or needed to, but how I compared to the others in my class.

It was a paradigm shift then for me when I began homeschooling the girls and was confronted with the requirement (in Kentucky) to keep grades:

The private and parochial schools shall record and maintain scholarship reports of each student's progress at the same interval as in the local public school, grading all subjects taught. (KRS 159.040)

A grade, by definition, is a ranking or sorting of the intensity, quality, etc. of the work - compared to others in the same study at the same time.  It quantifies how one is doing in relation to one's peers and serves as a way to communicate to parents and others involved in the child's welfare the progress of that child in relation to potential.  In a school, it serves a purpose.  When you are both teacher and parent, however, you know exactly the progress or lack thereof.  A grade begins to lose meaning when your goal is to instill instead a lifetime curiosity and love of learning and when it isn't needed to sort a group of students.



My new "grade" or report card is my son's A1C result.  I fight with myself to not see it this way, but I have read enough to know that many if not most parents of children with Type 1 Diabetes, and some doctors,  use that single number to judge how they are doing in the management of blood glucose. The A1C gives an approximation of the average blood glucose of the patient over the past three months.  If you don't have diabetes, it is likely your A1C is between 4 and 5.6%.  At 5.7%, you are considered at risk for diabetes.  The goal for someone my son's age is purported to be under 7%, and in adolescence, that can be a lofty goal.

As with homeschooling, time is shifting my perspective.  Each day, I know how my son is doing, as does he.  We have great days, we have shitty days.  We have pump failures, we have sensors that last two weeks instead of one.  We have nights of highs, lows, and perfect BG 85 all night.  We know how we are doing. Each mistake is an opportunity to learn.  Like algebra, our skill set increases which makes us faster and better problem solvers.  And, I don't care what our A1C is.

I know, overall, it has dropped.  How much?  Who cares?  What am I going to do with that single number?  Tell you that I've helped William manage better than that or this child? Tell you we've improved our management?  Interweave that number with our self-esteem?  Let you use it to judge us?  This is dangerous, I contend, because in life, there are ups and downs (literally, in our case) and circumstances within and out of our control will blow that A1C around like a toy boat on a lake.


Like homeschooling, diabetes management is really about lifestyle choices which take faith that long term, the results will be positive. So, why all this long winded dialogue comparing A1C with being graded?  I'm reading Dr. Stephen Ponder's book Sugar Surfing which I highly recommend and listening to some of his interviews.  He has made me think about this A1C business.  Tomorrow, I'm going to write about how I think a change should be made in supporting patients and caregivers of those with Type 1 Diabetes and a healthier way to communicate.

While you're waiting, go buy his book for your favorite person with T1D.  You (and they) won't be sorry.

Tuesday, June 09, 2015

Most Bizarre: Probiotics or I am My Own Universe

Most of us really don't want to think of all the invisible creatures living in or on our bodies.  Just thinking about eyebrow mites makes me itch and now I've gone and made you itchy, too. My most recent study for improving William's management of Type 1 Diabetes led me to a doctor that recommended probiotics.  Most of us can get these little creatures in our diet, for example in a good yogurt, but this doctor felt William needed additional support.  I'm a crunchy, Wholly Foods, essential oils skeptic by nature, but I was willing to try.

We added the single capsule at dinner.  For the first few days, he went low and required many carbs to counteract the lows.  This appeared to be due to the carbs not being properly absorbed and the gut more or less flushing the carbs through. (If you catch my drift.  If I am more explicit, my son will stone me if ever he finds I wrote a blog about him.  He's likely to anyway.)  This resolved itself.

I decided to move the administration of it to breakfast, which resulted in the need for a science experiment.  Yesterday, with a morning blood glucose of 80 mg/dL, I told him he could have cereal. If you know someone with T1D, you will know that cereal is "flight attendants:  prepare for take-off". Double arrows up on the CGM and if you don't catch it, BG ends up in the clouds (200 or greater). Cow's milk and Chocolate Cheerios (30 grams) was the easiest, and we experimented with 50% basal increases which helped but still often went up to 200 mg/dL.

To avoid gluten and cassein (our new thing since having T1D isn't inconvenient enough), we've changed to Chocolate Rice Chex and almond milk, and the probiotic.  Two hours later, he was at a normal BG, in fact I had to give him a temporary basal reduction and half a banana so that he could hit golf balls. Then, my daughter texted me - I'd given him the wrong almond milk and under-bolused 14 carbs!  Couldn't be, he'd have gone up another 50 or 60 mg/dL.   He had peaked at 140.  I shook my head unable to understand it.  

Today, I repeated the exact same scenario (minus the golf).  Same pre-bolus, BG at 77, 30 carbs for the cereal but didn't count the 14 for sweetened almond milk.  He peaked at 150 and was at normal 100 mg/dL for lunch.  Under bolused, 14 carbs.  Didn't spike.  Probiotic?  It is Monday?  He's in puberty?  The CGM is messing with me?  Is this a good thing?

Disclaimer:  As with anything on this blog, nothing I write is intended as medical advice. Consult with your doctor before changing your treatment and health choices.



Thursday, May 28, 2015

Freezer Jam

When the girls were young, strawberry picking season was much anticipated.  William is happy that my friend, Becky, dropped off a flat of them picked that morning by someone else! Manipulating virtual robots on his computer screen draws his attention much more than squatting in a field looking for ripe berries.

Freezer jam is a tradition, passed to me from my mother-in-law.  The intense strawberry flavor, particularly in the winter, makes your mouth tingle. The berries Becky brought were small, very red, and loaded with flavors and aroma.  These were locally grown and the horse apples they try to pass off as strawberries at StuffMart can't compare.

Freezer jam is so easy and quick to make, yet traditionally, it is loaded with sugar.  Looking for a way to reduce the carbs and sugar for a jam lover with Type 1 Diabetes, I could only find a few recipes, but most were for cooked varieties and in my opinion, cooking lessens the intense flavor. So, I made my own.  It turned out fabulous.  Here's how:


Clean the strawberries and remove the leaves and hull.  Put a layer of them in a large bowl and mash with a potato masher until there are no large chunks but bits of strawberries are visible.  If you have a boy helping you do this, be sure to show the technique of gently pushing down with the masher rather than banging the strawberries like with a hammer. Either that or change your white shirt before proceeding.  Make four cups of mashed strawberries.



In a saucepan, combine one box of Sure Jell No Sugar Needed with 1.5 cups of sugar substitute.  Mix well. Add one cup of cold water and stir until there are no lumps.  Bring this mixture to a boil and boil for one minute.  Stir the hot mixture directly into the mashed strawberries.  Stir until well blended.  Transfer the mixture into clean jars and put the lids on.  Let sit overnight to gel and then put in the freezer.  


My preliminary estimation is that there are 2 grams carbohydrate per tablespoon.  I believe with sugar it would be about 6 grams carbs per tablespoon.  It set well with the caveat that freezer jam is not like cooked jelly, but is a thick mixture.  It tastes really good on fresh baked bread or for those of you watching the gluten and carbs, on Fage yogurt.  

Tuesday, May 26, 2015

I Don't Care Who You Are, That's Punny!

Most people moan at my puns.  Inherited from my father, it seems one daughter, a niece, and perhaps my son enjoy a word play here and there. This calls for an example.  We were traveling through our small town and passed by an attorney's office. My daughter remarked on the man's first name, "Beach". Who would name their son "Beach"? she wondered aloud.  As we crossed over the railroad tracks, she turned and said she hoped he didn't have a son because then he would be a "son of a Beach".

Later, at dinner, I handed William a banana in the peel.  Too strict about carb counting, I like to peel it, weigh it on a scale that calculates carbs, and give him the peeled banana in a bowl.  He hates that. He wants to eat his banana like a monkey from the peel.  (At least the monkey in the old Curious George books, I'm guessing.)  Anna and I both remarked that we were not sure why that was so appealing.  My husband found the joke to be in bad taste.  

Speaking of monkeys, or rather apes, we visited Jelani, a gorilla who lives with the bachelors at the Louisville Zoo.  One day a while back, we met an older woman who had a Louisville Zoo magazine and she was showing Jelani photos in it.  He would bang on the glass to get her to turn the page. That intrigued me, so I loaded up our iPad with photos of gorillas from the web and headed back to the zoo. When he sees us on visits, we hold up the iPad and he comes right over.  He looks intently at the photos, especially those containing baby gorillas, and raps the window with his knuckles when he wants to move on to the next photo.

Jelani and William looking at the iPad
As you can imagine, this gathers a small crowd of people who say they can't believe how smart he is. Really?   I would go very often if I lived closer, but it was time to leave.  He touched his nose, then his mouth, then rapped his knuckles twice. He repeated the sequence.  It was not a random gesture, he was asking for more. If you have an iPad and can load it with some photos when you visit our zoo, you will find it a unique bonding experience with a gorilla.  I would like to see this catch on as a fun thing to do just so Jelani gets more screen time.  



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.  

Notes:
  • 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.

LinkWithin

Related Posts Plugin for WordPress, Blogger...

Popular Posts