Many people consider yesterday's Supreme Court decision an important event in American history. It was a momentous example of the court grappling with whether major legislation was backed by constitutional law. It showed the court struggling with ideology versus nuts and bolts legalities. Precedents have now been set for other laws which may follow. It could become a significant moment in the process of electing our next president.
Ever since taking a course in law in high school, and more in college, I've been fascinated by the legal process. I've followed cases which have ranged from O.J. to this health care issue in their content and scope. The politics involved in this one make it all the more intriguing. I read a lot about it, and found myself interested on the intellectual level in many aspects of the case.
This one held interest, though, outside of the intellectual realm.
I have a child with a pre-existing condition. My husband and I need to be able to provide her with medical care during her childhood. When she reaches whatever magical age is considered adulthood, our legal responsibilities may end, but we will not cease to care about her.
A few years ago, my husband was laid off, and for the 8 long months he was between jobs, we paid through the nose (with money we couldn't really spare due to the whole 'laid off' part of the story) to continue our insurance. We did this because if my child had required hospitalization, we could well have lost our house. We did this so that once a new job was secured, my child would not be denied health insurance. We did this because the cost of insulin, test strips, pump supplies and endocrinology visits is extraordinary.
The television, internet, and newspapers are buzzing with opinions today about the legal, political, and historical implications of yesterday's decision. That's all important, and it's pretty interesting.
For me, though, the bottom line is that under this law, my daughter has a fighting chance to continue to have health insurance coverage throughout her life. She won't be denied because she has diabetes, or charged ten times what her peers are charged. She'll never encounter a lifetime cap on her costs causing her to have to start paying for all of her own medical care. She'll be able to stay on our health care plan until she lands on her feet (she'll land on her feet by 26, right?). She will be able to afford insurance whether she becomes a world-famous concert pianist, an elementary school teacher, or a nurse who works per-diem.
Diabetes brings enough anxiety to our lives. This law brings just a little peace of mind.
It's Summer Music Time Again
Our town's summer music started this morning. So it seemed appropriate to revisit this post from last year:
This is the first week of my daughter’s summer music program. She’ll be at our town’s high school five mornings a week, beginning to learn the clarinet. The program is run by a couple of our town’s music teachers. Kids receive a daily group instrument lesson, sing in a chorus, and take a music theory class. As they get older, they can also participate in band, jazz band, and a musical theater production.
My daughter began participating in the program last summer. She had started piano lessons during the school year, and was developing a real interest in music. It seemed only logical to give her this opportunity to immerse herself in music for the first month of her summer. She loved every minute of it, as I’m sure she will this year too.
Here’s the thing: summer music doesn’t have a nurse, or anyone who acts as a nurse. They probably have a stash of band-aids somewhere, but that’s where any interest in medicine ends. So it was with a pit in my stomach that I made the decision to send my child with diabetes to this program last summer.
The first day she went last year, I packed her up with a cell phone, meter, juice box, diabetes bracelet, and a note in her backpack with every contact number I could think of. I walked her in the door, and spoke with the hall monitors. I’d already made sure the director was aware and would tell her teachers. I gave her a kiss, said goodbye, took a deep breath, said a prayer, and went home. For two of the longest hours I’ve ever spent.
The story has a happy ending. When I returned, she was alive, upright, and happy. The rest of the weeks went the same way. She checked her blood sugar as needed, and called me if it was off. She called me more, however, because she’d forgotten things and wanted me to bring them to her.
When she was diagnosed with diabetes at 13 months, my daughter was helpless. She needed an educated adult with her 24 hours a day, 7 days a week. It seemed for many years that this would always be so. It is with relief, and pride, that I continue to watch her grow into a responsible child. I realize that not all 9 year olds are capable of taking on this kind of responsibility, nor should they have to be.
The decision to send her last year was a difficult one. There was certainly less of a safety net for the many diabetes “what-if’s” racing through my mind. On the other hand, I knew I would be only a few blocks away. I knew she took on these responsibilities well at friends’ houses. I knew that an extreme diabetes emergency was extraordinarily unlikely. Most importantly, I knew that she really wanted to live and breathe music for a couple of hours a day in July. So the answer had to be “yes.”
This is the first week of my daughter’s summer music program. She’ll be at our town’s high school five mornings a week, beginning to learn the clarinet. The program is run by a couple of our town’s music teachers. Kids receive a daily group instrument lesson, sing in a chorus, and take a music theory class. As they get older, they can also participate in band, jazz band, and a musical theater production.
My daughter began participating in the program last summer. She had started piano lessons during the school year, and was developing a real interest in music. It seemed only logical to give her this opportunity to immerse herself in music for the first month of her summer. She loved every minute of it, as I’m sure she will this year too.
Here’s the thing: summer music doesn’t have a nurse, or anyone who acts as a nurse. They probably have a stash of band-aids somewhere, but that’s where any interest in medicine ends. So it was with a pit in my stomach that I made the decision to send my child with diabetes to this program last summer.
The first day she went last year, I packed her up with a cell phone, meter, juice box, diabetes bracelet, and a note in her backpack with every contact number I could think of. I walked her in the door, and spoke with the hall monitors. I’d already made sure the director was aware and would tell her teachers. I gave her a kiss, said goodbye, took a deep breath, said a prayer, and went home. For two of the longest hours I’ve ever spent.
The story has a happy ending. When I returned, she was alive, upright, and happy. The rest of the weeks went the same way. She checked her blood sugar as needed, and called me if it was off. She called me more, however, because she’d forgotten things and wanted me to bring them to her.
When she was diagnosed with diabetes at 13 months, my daughter was helpless. She needed an educated adult with her 24 hours a day, 7 days a week. It seemed for many years that this would always be so. It is with relief, and pride, that I continue to watch her grow into a responsible child. I realize that not all 9 year olds are capable of taking on this kind of responsibility, nor should they have to be.
The decision to send her last year was a difficult one. There was certainly less of a safety net for the many diabetes “what-if’s” racing through my mind. On the other hand, I knew I would be only a few blocks away. I knew she took on these responsibilities well at friends’ houses. I knew that an extreme diabetes emergency was extraordinarily unlikely. Most importantly, I knew that she really wanted to live and breathe music for a couple of hours a day in July. So the answer had to be “yes.”
This year, the decision was easy. Another hurdle has been crossed. Now we'll see how things go with the clarinet!
Each of these steps towards diabetes independence results in a few more grey hairs. It's funny to compare how worried I was the first time she participated in this program to how I felt this morning sending her off with her meter and a snack. Each year brings new situations she must handle independently. I hope she continues to approach them with the same level of responsibility. Meanwhile, any recommendations for my greying hair will be welcomed.
Each of these steps towards diabetes independence results in a few more grey hairs. It's funny to compare how worried I was the first time she participated in this program to how I felt this morning sending her off with her meter and a snack. Each year brings new situations she must handle independently. I hope she continues to approach them with the same level of responsibility. Meanwhile, any recommendations for my greying hair will be welcomed.
Pizza and Hot Dogs and Ice Cream, Oh My!
It's currently party season in our little neck of the woods.
In the past two weeks there have been exactly three days when my daughter did not eat pizza or ice cream or a hot dog. With maybe a bagel thrown in for good measure. Or a piece of cake.
Birthdays, Father's Day, cookouts, end of softball celebrations, end of girl scouts celebrations, end of school celebrations, graduations...it's endless!
These are not diabetes' favorite food groups. Fat + simple carbs usually = very high blood sugars for my child. We try some tricks with the pump which sometimes help, but her body would be happier with grilled chicken, a nice salad and some brown rice.
Yet somehow, maybe because she's been going at break-neck speed at all of these events, there have been few blood sugar disasters in this mix. Perhaps it's a phenomenon similar to the 'vacation mystery' we encounter. We're being precise and proactive about counting the carbs. Then she runs around the party they're served at at a much more active pace than usual. So it somehow balances out.
Once the end of the school year pace slows down, the eating will follow suit. We'll resume a healthier and more diverse menu with the occasional fun diversions. Unfortunately when the pizza is combined with a sedentary summer afternoon at home, those unpleasant high blood sugars will once again accompany it.
As always, we'll try our best to keep the high blood sugars at by. But really, I'd do anything at this point for a sedentary afternoon at home!
In the past two weeks there have been exactly three days when my daughter did not eat pizza or ice cream or a hot dog. With maybe a bagel thrown in for good measure. Or a piece of cake.
Birthdays, Father's Day, cookouts, end of softball celebrations, end of girl scouts celebrations, end of school celebrations, graduations...it's endless!
These are not diabetes' favorite food groups. Fat + simple carbs usually = very high blood sugars for my child. We try some tricks with the pump which sometimes help, but her body would be happier with grilled chicken, a nice salad and some brown rice.
Yet somehow, maybe because she's been going at break-neck speed at all of these events, there have been few blood sugar disasters in this mix. Perhaps it's a phenomenon similar to the 'vacation mystery' we encounter. We're being precise and proactive about counting the carbs. Then she runs around the party they're served at at a much more active pace than usual. So it somehow balances out.
Once the end of the school year pace slows down, the eating will follow suit. We'll resume a healthier and more diverse menu with the occasional fun diversions. Unfortunately when the pizza is combined with a sedentary summer afternoon at home, those unpleasant high blood sugars will once again accompany it.
As always, we'll try our best to keep the high blood sugars at by. But really, I'd do anything at this point for a sedentary afternoon at home!
Afraid
Most of my daughter's friends have pierced ears. Many of them had them pierced when they were infants or very little girls. A few others have commemorated recent birthdays with a trip to the mall for this rite of passage.
I'm not sure getting ears pierced in early elementary school is the best plan. A child needs to be reponsible enough to care for those new holes so they heal properly. Yet at ten, I'd be willing to let her get her ears pierced. She's always liked jewlery, and has even begun to wear some small clip-on earings.
The idea comes up once in a while, but she wants no part of it.
"Doesn't it hurt, Mommy?"
"Well, yeah, but not for long."
"It seems scary. I don't want to do it."
Here's a child who pierces her finger ten times a day to check her blood sugar. Every couple of days, she has a new infusion set inserted under her skin with a spring-loaded needle contraption. She's the last person in the world who should be afraid of ear piercing.
Don't get me wrong. I'm certainly not going to drag her to the mall kicking and screaming to get her ears pierced. She's the one who will choose when to get this done. But I do try to gently point out the irony of her postion.
"It's not the same, Mommy."
I guess not, but it seems to me it would be more fun to get holes punched in you to be able to wear cute earings than to be able to wear an infusion set. Am I missing something?
I'm not sure getting ears pierced in early elementary school is the best plan. A child needs to be reponsible enough to care for those new holes so they heal properly. Yet at ten, I'd be willing to let her get her ears pierced. She's always liked jewlery, and has even begun to wear some small clip-on earings.
The idea comes up once in a while, but she wants no part of it.
"Doesn't it hurt, Mommy?"
"Well, yeah, but not for long."
"It seems scary. I don't want to do it."
Here's a child who pierces her finger ten times a day to check her blood sugar. Every couple of days, she has a new infusion set inserted under her skin with a spring-loaded needle contraption. She's the last person in the world who should be afraid of ear piercing.
Don't get me wrong. I'm certainly not going to drag her to the mall kicking and screaming to get her ears pierced. She's the one who will choose when to get this done. But I do try to gently point out the irony of her postion.
"It's not the same, Mommy."
I guess not, but it seems to me it would be more fun to get holes punched in you to be able to wear cute earings than to be able to wear an infusion set. Am I missing something?
Rolling the Dice
Last night we attended the community pool party for all of the baseball and softball teams in town. This event, as with most of the activities at this time of year, is a food-fest.
My daughter began the party with an undesirable blood sugar of about 260. With that corrected, she promptly unplugged her pump and got in the pool. Half an hour later she emerged to air which was colder than the water. She was chilled, and I envisioned her blood sugar creeping even higher as a result.
Dinner was served, consisting of pizza, some fritos, some doritos, and a token portion of raw veggies with dip. My bolus calculation involved thoughts like, 'the pizza crust seems thin-ish,' and 'eh...those chips look like about 12 carbs I guess.'
Ordinarily at this point, I would have insisted on a somewhat 'countable' dessert. But a team-mate brought a big tub of italian ice from a great local ice cream shop. It was too fun to resist.
Fortunately, I'd overheard talk of this plan at a weekend game, so had looked up a generic italian ice carb count. Eyeballing my child's enormous portion of frozen goodness, and mushing it around in my mind's eye to fit into an imaginary measuring cup, I crossed my fingers and bolused an enormous amount of insulin.
An hour of running around on the playground brought her back to the table claiming she was 'starving.' Once the team awards were handed out, a handful of fritos was taken for the road. We headed to the car, two hours after the initial 260 blood sugar mark.
With much trepidation, I handed her the glucometer. "Let's see what happened," I said.
"Ninety-eight."
I made her repeat it, thinking I'd perhaps missed the first number which surely should be a two or a three.
"NINETY-EIGHT, MOMMY."
I'm certain that no diabetes expert would suggest the preceding course of events as the best way to lower one's glucose level 162 points. While I'm happy when a moment like this comes our way, I'm convinced that much of it is just a lucky roll of the dice.
My daughter began the party with an undesirable blood sugar of about 260. With that corrected, she promptly unplugged her pump and got in the pool. Half an hour later she emerged to air which was colder than the water. She was chilled, and I envisioned her blood sugar creeping even higher as a result.
Dinner was served, consisting of pizza, some fritos, some doritos, and a token portion of raw veggies with dip. My bolus calculation involved thoughts like, 'the pizza crust seems thin-ish,' and 'eh...those chips look like about 12 carbs I guess.'
Ordinarily at this point, I would have insisted on a somewhat 'countable' dessert. But a team-mate brought a big tub of italian ice from a great local ice cream shop. It was too fun to resist.
Fortunately, I'd overheard talk of this plan at a weekend game, so had looked up a generic italian ice carb count. Eyeballing my child's enormous portion of frozen goodness, and mushing it around in my mind's eye to fit into an imaginary measuring cup, I crossed my fingers and bolused an enormous amount of insulin.
An hour of running around on the playground brought her back to the table claiming she was 'starving.' Once the team awards were handed out, a handful of fritos was taken for the road. We headed to the car, two hours after the initial 260 blood sugar mark.
With much trepidation, I handed her the glucometer. "Let's see what happened," I said.
"Ninety-eight."
I made her repeat it, thinking I'd perhaps missed the first number which surely should be a two or a three.
"NINETY-EIGHT, MOMMY."
I'm certain that no diabetes expert would suggest the preceding course of events as the best way to lower one's glucose level 162 points. While I'm happy when a moment like this comes our way, I'm convinced that much of it is just a lucky roll of the dice.
Take the Cookie or Else
We have a commercial bakery outlet near our home and will occasionally stop there, particularly when we need to bring large quantities of cookies or donut holes to school or girl scout events.
This story takes place a long time ago, when my daughter was no older than 4. It was before 10 a.m., and we stopped there to buy bread. There was an open box of chocolate chip cookies on the counter.
"Take a cookie, sweetie," the cashier said, motioning to the box.
"No, thank you," my daughter politely replied. I've become a bit more flexible over the years since then, but at that point she knew she wasn't having a cookie at 9:45 a.m. on top of her morning snack and her usual high-ish mid-morning blood sugar.
"Are you sure, honey? I could open the oatmeal ones instead."
She shook her head, so strong in the face of temptation.
"How about a donut hole?"
Really? But my child stood firm.
"Well, then take this box of cookies for later...is that o.k., mom?"
My combined Scottish and New England roots could not refuse the offer of a free box of cookies, so we took them. She enjoyed a few after dinner in the coming week, as did the rest of us.
To this day, six years later, the same thing happens nearly every time we drive past the store. My daughter incredulously says, "Mommy, do you remember when the lady gave me a whole box of cookies?"
This story takes place a long time ago, when my daughter was no older than 4. It was before 10 a.m., and we stopped there to buy bread. There was an open box of chocolate chip cookies on the counter.
"Take a cookie, sweetie," the cashier said, motioning to the box.
"No, thank you," my daughter politely replied. I've become a bit more flexible over the years since then, but at that point she knew she wasn't having a cookie at 9:45 a.m. on top of her morning snack and her usual high-ish mid-morning blood sugar.
"Are you sure, honey? I could open the oatmeal ones instead."
She shook her head, so strong in the face of temptation.
"How about a donut hole?"
Really? But my child stood firm.
"Well, then take this box of cookies for later...is that o.k., mom?"
My combined Scottish and New England roots could not refuse the offer of a free box of cookies, so we took them. She enjoyed a few after dinner in the coming week, as did the rest of us.
To this day, six years later, the same thing happens nearly every time we drive past the store. My daughter incredulously says, "Mommy, do you remember when the lady gave me a whole box of cookies?"
My Old Friends
This afternoon required a quick stop at the grocery store. I mindlessly traveled through the aisles picking up a few standard items which I likely could find there with my eyes closed.
I quickly found an empty check-out line, and put my items on the counter. As I walked down to the end, I saw it: A stack of blue sneakers with a pen.
It was like running into someone I knew but not being able to place them because this was not where I usually encountered them. My initial reaction was pure happiness at seeing these old blue friends, followed by a few moments of confusion.
'But it's not walk season.'
'They've never done sneakers here before.'
'They weren't here over the weekend.'
'I wonder what made them decide to do this.'
As I bagged my groceries, the clerk asked, "Would you like to buy a sneaker to help people with diabetes?"
"Absolutely," I replied, enthusiastically enough to warrant a glance from the next cashier over.
As I signed my name, another employee walked by. "You're on blue sneakers already! How'd you do that?" Apparently they'd each started with the same color and every time they finished a stack, they'd move on to the next. My cashier had already been through yellow and green.
"I asked every customer to buy one," she replied. "And they did."
"Thank you," I said. "I have a daughter with diabetes and that really means a lot to me."
"My father had it too."
Each sneaker represents a donation of only a dollar to JDRF. And every little conversation like this is only a drop in the bucket in terms of raising awareness about this disease. Yet multiplied by the thousands of each of these which occur each day, the end result is progress.
And that's why I was so happy to run into my old blue friends at the grocery store today.
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