Unpopular

In the STAR program, we had a parent meeting about 504 plans. Everyone in the room talked about how hard it was for them to get teachers and administrators to follow the 504 plans for their child.

When it was my turn to speak, I admitted that I didn't use a 504 plan.

The group leader was evidently distraught at the prospect of a diabetic child running around without some sort of paperwork marking her as "special".

I explained that each year I write a letter to every teacher and coach that comes into contact with M, and cc the school nurse, who is obviously aware of her condition. I believe that for M, this is special paperwork enough: especially since (so far) I have a system of open communication with the school she attends.

A parent in the group asked me if teachers allow her the special accommodations needed to manage her type 1 at school. I responded that yes, they do, although M sometimes needs to remind them that she has diabetes.

For example, M's math teacher, whom she adores, was giving a test when M realized that the tubing on her pump was leaking. Panicked, she raised her hand and asked to go to the nurse.

"Can it wait?" the teacher asked.

M shook her head, "no" and was sent on her way.

When I spoke to the same teacher at a regularly scheduled parent conference, she admitted that she had forgotten that M had diabetes. "I assumed it was a female issue", she told me.

We took that opportunity to explain what diabetes is, and the multiple ways it can present itself in class.

She was sincerely fascinated, and we nearly ran over the allotted time.

A parent in the group said that rather than having to give "mini lessons" like this to M's teachers, a 504 would educate them. and save me time. Then she told me about her yearly ritual: she holds a meeting with all of her child's teachers at the beginning of the year to explain what diabetes is, and how to care for her child. Then each teacher is handed the 504 and the care plan, and asked if they have any questions.

I listened to her, and what she said made sense. But arguing that the 504 would somehow save me time was not true. I could hold such a meeting with M's teachers and never hand them a sheet of paper.

I was smart enough not to say this, however.

But the group leader leaped on the parent's comments and took the opportunity to press the issue with me. As the entire group looked on, she explained that since the 504 is a legal document that it would protect our family. "From what?" I wondered. If something serious happens to M in school, all a 504 does is give me the right to sue the school, which, considering that I had already laid it all out in a letter, is probably true anyway. Suing a school wouldn't help me, and a 504 is no guarantee that she would get the care that she needed. I mean, I know it couldn't hurt, but with only two and a half years left of public high school, was it really worth the effort? After all, when she was in a teeny-tiny Montessori school, M didn't even have a school nurse and managed quite well.

The group leader told me that she would be happy to help me with the legalities and formation of the document, to which I shrugged and replied, "You know, it's a lot of work, and I just don't want to do it."

After that little tidbit popped out of my mouth, a nano-second of doubt occurred: a tiny moment where I felt sure that I had said the wrong thing and would be upbraided in front of my peers.

But nobody said anything, and we just moved on to another topic.

Yea me!

Now we'll see if anyone talks to me at the next meeting.

STAR- FYI

STAR is the name of a program that M has joined this fall.

STAR: Steps Toward Adult Responsibility.

The program is sponsored by Dartmouth Hitchcock Medical Center in Lebanon, NH. The two meetings that we have attended have been on the Dartmouth College campus.

The group is for teens who have chronic conditions. Right now, the majority of them seem to have type one diabetes, but there have been students with a variety of illnesses including crohn's disease, epilepsy, and cerebral palsy.

The group is also designed for the adults who parent these young people.

It is a mentoring program. The teens get to spend time with college students who are dealing with a chronic illness, and the adults meet in a separate room with various experts and each other, to discuss the pitfalls that their children are facing, and how best to prepare them for future independence.

The kids definitely have a better time than the adults. While we are discussing care plans, we hear the kids roaring with laughter in the other room.

I first heard of the program when M attended the Winter Weekend last February. The Weekend was a program aimed at teens with type one. About 35-40 kids attended, and M enjoyed herself immensely. I had basically coerced her into going, but after attending and hearing about the STAR program, she decided that having regular meetings with others who face similar challenges might help to keep her on track, both emotionally and practically.

Now I don't know if I can draw a direct correlation between her participation in STAR and her improved attitude and A1c numbers. After all, she is maturing as well. But I do know that she is enjoying the meetings, even if they are 40 minutes away.

I enjoy them less than she. I, like most of my fellow type 1 parents, am very opinionated about what should and should not happen in the life of my child.

And we don't all agree.

But now I have a group of parents with whom I can discuss any concerns I might have.

Like how to change my doctor.

But that's another post.

Diabetes Blog Week

As I continue this journey with my unwelcome guest, diabetes, I learn new stuff all the time.

November is diabetes awareness month.

The American Diabetes Association and the Juvenile Diabetes Research Foundation are both good organizations with differing philosophies.

Some DNEs don't like it when you read or ask questions.

And this week is Diabetes Blog Week. This is the time of year when we are supposed to look around, find blogs that we like and share them.

So here we go.

My favorite diabetes blog is the first one I found. I was desperately looking for coping strategies, when I found Six Until Me by Kerri Sparling. At the time she was pregnant and discussing the trials and tribulations of her diabetic pregnancy, which at times made me weep. She has a nice, light style, and she evidently blogs for a living.

The next blog that I bookmarked was Typical Type 1 by Jacquie Paul Wojcik. She reminds me of what a grown-up M might be like. She drinks beer. She leaves her nasty test strips lying around. She is witty and insightful about the reactions of others to Type 1.

The only other diabetes blog I have on my bookmark sheet is Death of a Pancreas by Joanne, a Canadian immigrant who now lives in Texas. Her daughter is much younger than M, and even though we have never had a direct conversation, she and I do check out each other's blogs. She to look a little into the future, and I to remember that I am not the only insane diabetes momma out there. I discovered Joanne's blog when Kerri posted the video "What NOT to say to the parent of a Type 1 diabetic", which is hilarious if you run in diabetic circles.

I tried to get M to blog about her experiences. I thought other kids might benefit from her discoveries as a diabetic. She gave it a shot. I think she posted about 6 or seven one paragraph posts. But I realized that I wanted her to do it more than she wanted to do it.

Then I realized that I wanted to do it.

So here we are, nearly two years and 98 posts later, still babbling about the diabetic experience from a parental point of view.

I am always giddily pleased when I run into someone and they say that they have read my blog. So to those of you who have been reading it: Thanks! Even if one reader out there has learned more about diabetes, then we are one person closer to dispelling the myths and making life easier for other diabetics. And I appreciate that.

Keep reading, my friends!

Left out

It happens.

I try to understand that it happens.

I tell myself that I would rather have a person tell me that they are not ready for the responsibility of watching my daughter during a sleepover party, or on a trip to the beach. I tell myself that if they are not able to deal with my daughter having Type 1 diabetes, then I do not want them to be in charge of her care in a situation when I might be out of contact for even a few minutes.

But it hurts.

It hurts me to even ask them.

And even though I understand it, it upsets me that some people are unwilling to take the risk.

She has not been hospitalized, lost consciousness, or flipped out since she was diagnosed. She knows to call me when her bg hits certain levels, just so that I can be part of her action plan for the day. And realistically, she can handle it all herself for a few hours. Odds are, nothing will go wrong.

But you never know.

If she loses consciousness, if she grows unreasonably angry, and the person in charge doesn't know what to do, it's a problem.

M's bg levels had been crazy. All over the place crazy. 595! 33! 578! 41! It didn't stop for days!

And when we finally had two days of it more or less under control, M was to go to a friend's house overnight and then join the family at Anime Boston to honor her friend's birthday.

The plans had been in place for weeks.

M was the only person that her friend invited.

Everyone wanted M to be able to go: M, her friend, me, the friend's mother.

This friend's mother is fantastic. She has traditionally been unafraid to take M for days at a time. But this was unusual. M's bg has only been back under control for a day or two.

I knew I had to make the call, and I hated it.

I explained the situation to the mom. She listened carefully, and asked several good questions.

I told her how much I hated asking her to take M under these circumstances, but I thought it was only fair that she fully understand what she was getting into.

After a few more questions, the mom stated that she would take M. She asked for contact numbers for the entire time she had M, as well as permission to treat letter in case of an emergency. Then she told me that the girls would refrain from the birthday cupcakes that she had planned to share.

I started to protest that M shouldn't be any more of a burden to her than necessary. She said, "No. It is not all right for my daughters to pig out in front of M when she can't enjoy it. We will save the cupcakes for later."

I have a friend who once told me that I can juggle a million things, and I am always in control: until my kids are sick. It unnerves me.

So, at this point I snapped: not in a bad way, but I could feel tears of relief stinging my eyes. My voice was trembling as I thanked her for her kindness, and told her how much I appreciated that she was willing to accommodate my daughter.

And I really did.

Anime peeps. Long story short, a good time was had by all.

Story Time Success

I may have mentioned once or twice that I teach high school.

I love this job.

Kids keep you on your toes, and normal adults are so boringly well-behaved.

I have a Spanish 1 class late in the day. This week we were learning "la mochila" (the backpack). In preparation for the lesson, I had packed one of M's backpacks with some typical and not so typical items that one might find in a high-schooler's backpack: el lápiz, el bolígrafo, el cuaderno, la carpeta, etc. The kids would guess what was in the backpack in English, and I would look inside to see if the item was in there. If it was, I would remove it, set it on the marker tray (what used to be a chalk tray), and label it.

Included in my backpack was ¨el libro¨ . When a student guessed that there might be a book in my backpack, I reached in and pulled out the book I am currently carrying around: Think like a Pancreas.

One of my students could probably have moved on to Spanish 2, but was a little shaky and ended up taking Spanish 1. He does a lot of doodling in his notebook as a result. At the end of class, he handed me a story that he wrote when he should have been copying the vocabulary into his notebook.

The Pancreas That Wanted To

             Once upon a time there was a little girl. Her name was Victoriabby-Devon-Charlie-the great. But they called her Devon for short. She had diabetes. She was very sick from it, and all of a sudden the pancreas didn't work. So she has to take insulin, because her pancreas couldn't. Devon went to the doctors and the doctor said "your pancreas is being silly" to her. All of a sudden her pancreas woke up, like sleeping beauty. It didn't like being called silly, so it wanted to produce insulin but couldn't. When Devon went to the drs. to get more insulin, but her pancreas only wanted its own type of insulin, so it tried and tried, and some just came out! The insulin from the doctors mixed with the real insulin from the pancreas, and the mixture caused a reaction, and the reaction got rid of diabetes forever. Then, Victoriabby-Devon-Charly-the-great lived happily ever after.

                                                                       THE END

I promise you that this is exactly what he wrote. I had to work very hard not to edit it.

All of my students know that M has diabetes. I try to give the kids a rudimentary understanding of what it means to have diabetes. When I read this unassigned piece of written literature, I thought that it showed some tiny level of success.

Not because this fourteen-year-old could construct flawless sentences, and not because he got all of his facts straight.

I felt success because he knew what a pancreas was. He knew what insulin was. And he understands the dream of a diabetic is for a quick cure.

Now if only M's pancreas would grow tired of being called silly. THEN we might see some results!

Brittle

I learned a new diabetic term recently.

I am always sorry to hear that there are more diabetic terms that I have not heard before. To me, that means that there are things I don't know, might never know, or might not ever want to know about diabetes.

The term I learned is "brittle diabetic".

A brittle diabetic is one whose blood sugars are especially difficult to control.

I have often wondered about this.

It seems that, so far, M's blood sugars are usually somewhat predictable. Not always, but usually if we have a really high or really low number there is some rhyme or reason to it. And it's usually something that we can figure out, as long as M is cooperative and truthful during the figuring process.

But I had noticed that some of my students seemed to have a greater number of highs than she. That the highs seemed far more unpredictable than hers.

Of course, being a smug diabetic mom, I at first thought that perhaps my students were just not as good at managing their diabetes as my little angel.

But it does seem to me that some people just have better luck than others.

Then I read about Miranda. Miranda was a young woman who died from complications from Type 1 diabetes.

My mother made the acquaintance of Miranda's mother through work. Of course they went through that weirdly comforting "You too?" of diabetes connectedness, and then Miranda's mom shared a book that she had written about her daughter's painful journey through diabetes. In it, the book discusses the fact that Miranda was a "brittle diabetic."

Oddly, the book says that Miranda found the diagnosis liberating: she realized that her crazy bg levels were not her fault.

In life, I have often told myself that it could be worse. That someone out there has it worse than I do. It is both horrifying and comforting. It also helps me to pull myself up, realizing that there are people out there with way bigger problems who not only survive, but find joy in every day.

I know that I am not the only one who functions in this way.

Once I went swimming at the house of a friend of a friend. She and I had both, long ago, suffered second-trimester miscarriages (also known as still births). With years between our shared experience and the day of our discussion, we talked about how we felt at the time.

I said that I always felt lucky, because I had not had a child before the miscarriage, and I really didn't know what a true loss it was: something I would have surely known if I had experienced childbirth previously.

My companion looked me right in the eye and said, "Now isn't that weird. I felt lucky that at least I had had a child before, and that the loss would have been greater if I hadn't."

So, while I am saddened, and often exhausted by living with Type 1. While I fear, on some level, for my daughter's life every day, I have to count my blessings yet again.

She's not brittle.

My baby is strong.

Just keep moving. It will get better!

Eating disorder

There has been some discussion on the interwebs about diabetes and eating disorders.

Now here's something I hadn't thought about, or worried about enough, evidently.

I first came across the topic after Joanne had posted her fabulous video, "What not to say to the parent of a Type 1 diabetic". In the video, she mentions Halle Berry. Saying that if Halle Berry can cure herself, why can't the protagonist's daughter?

The response? "Halle Berry is Catwoman. My daughter is not Catwoman."

This prompted me to research the topic of Halle Berry and diabetes, because I had never heard anything about it before.

Wow! Was I out of the loop!

It seems that Halle Berry had been diagnosed with Type 1 diabetes, and declared on a national talk show that she had "cured" herself, and now has what she likes to call "Type 2" diabetes, because she can control it with diet and exercise.

Well, I've got news for you: Halle Berry didn't cure herself, (There is no cure for diabetes. You can only manage it.) nor did she convert herself into a different type of diabetic (The difference is not in the use of insulin, nor in the age of the patient during diagnosis). As a diabetic, she should know the difference between the two.


I mentioned that when M was diagnosed, she had lost 20 pounds in three weeks. My daughter was starving to death because her body could not process that food entering her body. In fact, she was not only starving to death, but her body was being poisoned by the food she ate.

If not for insulin, my daughter could have looked like this early recipient of insulin:

courtesy of http://www.diabetesindia.com/diabetes/diabetes_insulin5.htm

(same child, before and after experimental insulin treatment in the early 1900's)

and eventually would have died after a few months, maybe a year if she didn't eat much.

Which leads me to this idea about eating disorders.

During my "Halle Berry research phase," I read a blog that suggested that Ms. Berry might be deliberately keeping her bg high, at risk to her own health, in order to stay slender. Knowing what I know about diabetes and weight loss, I could see why someone might jump to that conclusion, but I said "pshaw" to the idea, thinking that a celebrity with a gajillion dollars and some determination might find just the right diet and exercise combination to keep her bg levels in range.

Not "cure" herself. But control her diabetes.

Fast forward to mid-November of this year, when I received a catalog from the ADA.

This time of year they sell things like Christmas cards and ornaments at a high price, a portion of which goes to diabetes research. The catalog is full of items to purchase as well as inspirational or frightening articles about diabetes.

I was surprised to see an article in the catalog  about diabetes and eating disorders. It told the stories of some young women who were risking their long-term health in order to stay slim. They fully acknowledged that they did it. They knew that they shouldn't. But apparently they didn't think that what they were doing qualified as an eating disorder.

So, if this is a bonafide problem in the Diabetic Community, maybe the suspicion about Ms. Berry had some merit.

On the other hand, maybe she was misdiagnosed.

So great.

As the mother of a teenager - a daughter- with diabetes, who clearly doesn't have enough for which to be watching out, I now have to stay alert for signs of an eating disorder in my kid.

The signs and symptoms are the same as for other eating disorders.

As a high school teacher, I am familiar with them all.

I want to end by saying that I am hopeful that my pragmatic daughter will be wise enough not to get caught up in the pursuit of perfection through extreme body management.

But I will indeed keep my eyes open.

Thought I'd end with a healthy-looking image.

Breast Cancer Envy

Breast cancer is a horrible disease. It threatens, and sometimes takes, lives. It alters the way a woman feels about herself and her own body. For this reason, it is recommended that women over forty start getting regular mammograms every year or two.

Billions of dollars every year are spent on education, research and prevention of breast cancer.

Kids in the high school where I teach sport "Save the boobies" wrist bands with the support of the administration.

There are organizations that will take your long hair, and use it to create wigs for women who are undergoing chemotherapy.

And every year comes the advent of breast cancer awareness month.

Today, M is participating in a breast cancer walk. A walk that is anticipated to have an attendance of over 5,000 people (it ended up being closer to 5,500!).

There are many wonderful events and campaigns that raise money for breast cancer research. I even remember nearly an entire season of General Hospital dedicated to breast cancer. During the season, the son of the breast cancer victim points out that while AIDS has turned out to be a popular charity, breast cancer kills many more people yearly.

Everyone wants to cure breast cancer. Do you think the victims of breast cancer are going to settle for better treatments? NO! They want a CURE! And I don't blame them.

But lets go back just a minute here. AJ Quartermaine, while breast cancer kills more people annually than AIDS, diabetes kills more people annually than breast cancer and AIDS combined.

While everyone seems to understand what breast cancer is, nearly 100% of the people I meet don't really understand what diabetes is. This includes some medical professionals.

We have diabetes walks. But the JDRF walk I attended last month, in the same community as M's breast cancer walk, had maybe 100 participants. MAYBE.

And, while General Hospital dedicated a lengthy, comprehensive, and detailed story line to breast cancer, what do we in the diabetic community get? Oliver, on Hannah Montana, is diagnosed with diabetes one day. Then we never see his bg meter again. Apparently Oliver is all better, and his daily management would not fit well into such a pop tween sitcom.

Finally, I am tired of people thinking that insulin is "good enough". Do you think that breast cancer patients think that mastectomies are "good enough"? I assure you, they do not.

Diabetics are expected to endure their illnesses, simply because it isn't "in your face". People can manage diabetes without you even noticing, so things must be good enough, right?

Nope.

Not even close.

Diabetes must be managed every minute of every day. It's like taking exams in class every day, except that not doing well could result in death.

Death.

We must need a better marketing team for diabetes. Maybe diabetics and their families are so busy handling the day-to-day struggles, that they don't have time to advocate for others with the disease.

Why does the public not seem to take diabetes seriously?

A nurse who goes to my church may have explained it best. She was commenting on another parishioner who routinely works very hard and volunteers regularly. But she, at times, pushes herself too hard, and doesn't take care of herself. The woman is diabetic.

One day, the nurse approached her and scolded her to take a break during our Christmas fair. Then she turned to me and said, "You know what they call diabetes, don't you? 'The silent killer'."

Well I, for one, am not going to remain "silent" any longer.

Good luck ladies!

Concussion

As I may have mentioned, M is the goalie for her field hockey team. Although she has never played before this season, her improvement has been marked.

Earlier this week, however, her team got a new kind of penalty that neither she nor I had heard of. A player fell on the ball, apparently covering it with her body.

I guess this was a serious one, because M was set up in the goal while the rest of her team was set up behind the midline. A girl on the other team was given a one-on-one shot at the goal.

The girl wound up and smacked the ball. It traveled in an upward fashion, hitting May on the front of her (helmeted) head.

It would have been a lot cooler if it had deflected right back into the field, but instead it went into the corner of the goal.

I wondered if it hurt. So when M returned for a time out, I asked her how she felt. She said, "I have a wicked headache!"

Somewhat alarmed, but not panicked, I asked if she wanted some Tylenol. She said she would be fine, and finished out the game.

It is three days later, and she still has the headache. She took "the concussion test", which she did not want to do ("It's so friggin' long!"), and it came back as "not a concussion" but with "22 symptoms."

While I wait to hear from the trainer about her recommendations regarding a doctor visit, I decide to look up information about diabetes and concussions.

To my dismay, I found something. It seems that diabetics do not "withstand impacts to the head" as well as non-diabetics. This is something I had never thought about, and is certainly not up there with the "diabetic feet" issues that are so frequently communicated to the diabetic community.

Why, you may ask, would having diabetes matter to your head with regard to impact?

Evidently, if brain cells contain high levels of glucose and magnesium, they are practically invincible. Unfortunately, since the diabetic body doesn't use glucose very efficiently, and depletion of magnesium nearly always predates insulin resistance (in Type 2),  we have the perfect cocktail of brain cells' natural defenses going down.

Not good.

In the meantime, I will wait for advice from the trainer and the school nurse.

And I will look up new and exciting things for me to worry about.

Paranoia

Recently, Joanne blogged about what is known in the DOC as "the thought." Her son is approaching the age at which her daughter was diagnosed with Type 1 diabetes. "The thought" has also been addressed by Kerri, a diabetic mother with a not-quite-two-year-old.

"The thought" plagues every parent that has diabetes, or has a child with diabetes. "The thought" is the idea that perhaps another one of our loved ones will be stricken with this disease.

You see, nearly everyone's Type 1 diabetes diagnosis has a similar story. " I felt sick/ nauseous/ fatigued for two/ three weeks. I was eating/ drinking all of the time. I was also extremely moody. I thought I was just suffering from a bad cold/ going through a growth spurt. After a while, I went/was taken to the doctor, where I found out that I lost 10/ 14 / 20 pounds in those couple of weeks. The doctor tested my blood sugar and it was 470/635/900. I didn't really know what that meant until I found out that a normal person's blood sugar readings are between 80 and 100."

(FYI: M's story is nauseous, fatigued, three weeks, eating, cold and growth spurt, 20 lbs, bg of 635).

But, as you can see, the symptoms of diabetes can easily be misconstrued as a bad cold, mono, or a mild case of the flu. In fact, in ancient times, there was only one way to identify whether someone had diabetes. One had to taste the patient's urine. If it was really sweet, then one knew that the person had diabetes and was going to die within a year or two. (Yikes!)

The point is, the symptoms of diabetes are very similar to those of many other, less life-threatening maladies. A list of such common symptoms can make things a little harrowing for those of us who have gone through the process of Type 1 diagnosis in the past.

Case in point: M has an older brother. Not one full year after M was diagnosed, he started exhibiting these symptoms: fatigue, pallid complexion, unusual thirst, and weight loss.

My mind went right to diabetes.

Now perhaps this seems crazy to a medical professional. After all, M is the ONLY person in my giant extended family with Type 1. The closest relative we could find that had it was my father's cousin's grandson. (What is that, her 17th cousin 7 times removed? I never understood how that worked...). Indeed I wondered if I might be a little paranoid.

But I felt better after talking with Bill.

I asked, "Do you think I'm crazy for thinking that our son could possibly have diabetes?"

I felt so much less crazy when he said this:

"No. I'm thinking that it could be diabetes. Of course we are thinking it could be diabetes. Why wouldn't we?"

Which is one of the many reasons I love this man.

The quick answer was to use May's bg meter on her brother to learn that his bg was normal, which it was. He just had a bad cold. But I will tell you that the 5 seconds of waiting for the result were the longest 5 seconds we had had in a long time.

I see diabetes everywhere. One week my dog seems especially thirsty. Does she have diabetes? I have a student who seems increasingly pale and tired. Does she have diabetes?

It's nerve-wracking.

"The thought" even makes people feel guilty for thinking it, as if by thinking it, we might make it happen.

"The thought" robs people of normalcy.

Well, at least the normalcy you can have while checking, double checking, and triple checking bg levels, adjusting insulin doses, tracking all food consumption, waking up in the middle of the night to make sure your kid is still breathing, etc.

But seriously, with all the punishment that comes with diabetes, it seems that "the thought" just adds insult to injury.

We must rally to find a cure for "the thought".

I don't know if this quite qualifies as a "cure" but maybe it's a start!

First impressions

Sometimes I feel like I am not good at this whole "first impression" thing. Especially when it comes to explaining diabetes to those responsible for my child.

You see, one must strike a balance: reassure people that your child's head will not spin around, projectile vomit pea soup, or simply pop off - "she's perfectly normal!"; while simultaneously telling them that diabetes is a very serious and life-threatening disease.

I have tried several approaches, but none of them really seems to work very well.

The latest attempt I had to make was with M's field hockey coaches. During the first team meeting, M explained that she had Type 1 diabetes. The coach said, "Okay, well, maybe your mom can come talk to us about it tomorrow at practice."

When "tomorrow at practice" arrived, I dutifully waited until the other parents had left or were focused on their own daughters, and began chatting with the coaches.

I started with my usual, cool, laid back introduction to the conversation: " I am not sure how familiar you are with diabetes." I say this, because some coaches have extensive experience with diabetic athletes, and I do not want to talk to them like they are D-life newbies.

The answer from M's coaches today is that they know very little.

Now here is the decision I need to make: Do I need to emphasize that M is capable and in control, or do I have to first let them know how important it is that we keep her safe?

I start with the concrete. I point to her pump. I say, "M is a Type 1 diabetic, which means she needs this in order to live."

I realize my mistake immediately, as I see the coaches' eyes widen. I imagine their pupils dilating in fear. I hesitate, thinking that I may have chosen the wrong route here, but it is too late. I can't say, "Never mind. What I meant to say was, 'you don't normally have to worry about her'."

The die is cast. I must plow ahead.

I try to change tactics. "I want you to know that M has never had a diabetic emergency. She has never passed out or been in the hospital since her diagnosis."

This is better. The coaches nod. One of them says, "She has control."

I think, "Okay, good choice of words. Apparently all of those television commercials  for Type 2 diabetes paraphernalia have a use. They educate the public and give them appropriate key phrases to use." I smile and tell them, yes, she has control, and she is very responsible (at least on the field!) with her diabetes.

I tell the coaches that bg can go high or low, but the one I am most concerned with is the low, because a) it is more immediately dangerous and b) she tends to go low while playing sports.

Sure highs aren't great, either, but it takes a long time for M to "go high", and if she checks her bg before and after a game, there is no way it will go high enough to be dangerous.

I explain the symptoms for a low: spaciness, shakiness, faltering, feeling hot from the inside. I explain that M can identify when she begins to go low, and she will let them know that she needs a rest to check her bg and possibly have a snack, which is what will bring her bg back up.

The coaches are beautifully alert (perhaps because I gave them the death scare right at the beginning, for which I am still feeling badly), and nod. They suggest a hand signal that M can give them from the field to let them know she needs a break ("hang loose"). They encourage her to communicate with them and they let her know that she will not be penalized for taking breaks due to her diabetes. They nod and smile encouragingly. Things are going swimmingly.

Until I have to tell them about the Glucagon.

I hate the Glucagon talk!

Telling people, "Oh, and by the way, if she passes out, you will need to mix an injection and give it to her. Then call 911." is not fun. This is the part that stops the squeamish from having M over for sleepover parties.

The good news is that I can say, "M has never passed out, and we have never used the Glucagon. In fact, when we renew the prescriptions, we practice mixing with the old ones and then throw them away.

"If she checks her bg before and after practice and games, she should never have any problems, so you will very likely never have to use it. Really. Hehe."

But still, the coaches seem to me to get a little panicky (M disagrees with me here. She says that they seemed fine). They start discussing who would be authorized to administer the injection. Would only the trainer be able? Or could they?

This is new territory for me. M has never been to public school. She has only played sports in private clubs. Wherever she went, people just said, "Okay, but if you're here, you'll do it, right?" I didn't realize that we might have to follow some sort of special protocol here.

The coaches tell me they will look into it (to their credit, they learned by the following day that they are permitted to administer the Glucagon), and I spend the last few minutes of the conversation going back to reassuring them.

I feel very sympathetic about their uncertainty. And I understand their eagerness to understand things clearly.

I know it's stressful to watch someone else's kid when they have a potentially life-threatening condition. I remember taking a four hour hike with an asthmatic who left his inhaler at the bottom of the mountain. Not good.

So this is what I say: "Most of the time, you won't even know that M has diabetes. She will do all of the work, and she will act like a normal kid. The chances of her having any major problems are slim, but I just want you to know that if something does happen, you will need to be prepared."

They were truly terrific in their response. They seemed eager to learn more about the disease, and even asked M if she could share the "danger signs" with her teammates. M readily agreed, and we walked to the car: M content, and I worrying about making the wrong impression.

I worried that they were too worried.

On the other hand, I guess I should be relieved that they didn't worry too little. They definitely took it seriously.

But am I robbing M of having a "normal" relationship with her coaches? Am I stressing the coaches out too much?

I don't know, but I hope not.

Maybe there is a chance that I'll get it right next time.

You're right! I am sure that everything will be fine. Diabetes won't stop us! :)

Then again, maybe not.

Treatment and trials

When M was first diagnosed with Type 1, Bill and I made a decision almost immediately about research, and our daughter's potential role as a guinea pig for finding a cure for diabetes. We would do anything we could to help support the research regarding the causes of diabetes,  but we did not want to engage in any experimental treatments for it. We decided that if she wanted to engage in experimental treatments as an adult, we would support her, but she wouldn't be doing it on our watch.

We dutifully enrolled in a program called TrialNet, which tracks immediate family members, and some secondary members, for a few years, and helps the researcher identify markers that might make one more prone to Type 1. We had our blood tested, let them gather their information, but, as they tested siblings up to 18 years of age, and parents of up to 42 years, we quickly aged out of the program.

But I did receive a nice tote bag.

As far as other information gathering programs, it wasn't until this year that we enrolled in T1D Exchange, which collects data from families as well. Did you know that psoriasis is possibly connected with Type 1? Now you know.

Now, being a D family, we are always on high alert for any information about Type 1 in the mainstream media. You know the media everyone else reads. Not the JDRF website, nor Children with Diabetes message boards, nor JAMA, nor the Joslin Newsletter.

Recently, Bill, M, and I discovered such an article in the Los Angeles Times about a new treatment for diabetes. The summary is as such: A doctor from Massachusetts General Hospital has been working on identifying a vaccine to prevent diabetes. While working with the vaccine, and while testing it on humans, she discovers that the vaccine can actually regenerate the precious beta cells that make the pancreas work; even in people who have had diabetes for a long time.

And Bill and I think: "Wow! Wouldn't it be cool if this pans out?"

And M says, "I want to get in that study!"

Imagine the sound often used in party scenes at the movies. The teen heroine is trying to share something with her boyfriend, but it's too noisy for him to hear, so she ends up yelling, "I think I'm pregnant!" really loudly. With the screech of a record being scratched by a needle as it suddenly stops, it becomes silent, and the whole party looks at the distraught couple.

That record-scratching screech is what I hear in my head.

The thing is, we, as M's family, want to see a cure in her lifetime.

For M, tomorrow wouldn't be soon enough.

I sometimes forget that this is how she feels. I feel my heart sink. I feel a stone in my stomach. Bill and I look at each other, and a silent agreement passes between us.

"We'll talk to your DNE about getting into the study. We want to make sure it's safe."

In the meantime, I check it out. The vaccine sounds safe. It has been used for the prevention of other diseases, and the only side effects reported are a soreness at the injection site. Am I sure I want her to be involved in this study? No, but I want to talk to someone else about it.

When we bring up the study to the DNE, she tries to sound impartial, but she involuntarily makes a face.

She says, "You just want to be very careful when deciding to enter this study. The doctor running this study is very controversial. People are very suspicious. It sounds like a dream come true: it cures diabetes and there are no side effects. But you want to make sure that you research the study thoroughly before deciding you want to be a part of it. You don't want to risk your health unnecessarily."

She then tells us about a "closed loop" study that is coming up in the fall. M agrees that she would like to be a part of this study, and asks the DNE to make note of the fact that she would like to participate.

While this sounds great, I can't help feeling disappointed.

Our DNE is pretty conservative. We have asked her about eliminating insulin injections through diet, and she shut us down, saying she had never heard of such a thing. Unless she hides under a rock, I know that it's not true. If I have heard of it, she, a professional in the field, has certainly heard of it.

I figured that she didn't want to dedicate our precious office time to something that she thought would not be a viable option for M.

I suppose that she also feels similarly about the diabetes vaccine.

So I am back where I started.

I will do some research. I will read some more. I will check into the study. And I will keep praying.

Hmmm. Looks like the jury is still out.

Pump Visit Number Six: Don't Worry, Be Happy

The day after her NYC trip, M has to go in for another pump visit.

We arrive in a timely manner this time, and our DNE looks over M's numbers.

To her, they look fine, even though they range from 45 to 389 mg/dl. The DNE speculates aloud that perhaps I don't like the feeling of losing control of M or the management of her diabetes. I am "worrying too much."

I think to myself, that once M demonstrates consistency, I will be more than happy to completely hand over responsibility for her care. As it is, she is very much in charge. I simply remind her to check her bg before going to bed, and ask her what her results are maybe three times per day, to make sure we are staying on top of any body changes. All changes we make in her dosing are discussions in which we compromise and agree on a course of action.

However, I find that when dealing with medical professionals with whom one disagrees, it is easier to let him or her think that you agree with them.

For example, when my son was an infant, he was nursed (aka breastfed) exclusively for six months. Then he moved straight to solid food. I think he ate two jars of baby food, and then started grabbing food out of my hand at dinner time.

The doctor wanted me to start him on whole milk right away, because "babies need fat." While I agree that babies need fat, it doesn't mean that a 30 pound 6 month old needs fat when he is still nursing 4-6 times per day.

Also, she said, he would need iron supplements.

I am a "good girl", a rule follower. So I tried to give our baby the iron supplements. He gagged on them, cried, and spit them out. They irreparably stained his shirts. I found the exercise to be futile, as his blood iron levels were healthy prior to my attempts to administer the supplements.

Logic, sometimes, must rule over whatever the doctor said.

I explained my objections about whole milk to the doctor. I said, "The baby's nursing 4-6 times per day, and eating a pint of Ben and Jerry's every week. I think he is getting enough fat for now. I don't enjoy drinking whole milk, so he's getting 2% like the rest of us."

The doctor grew alarmed, thinking that I was putting my son "on a diet", and cautioned against doing something so dangerous as giving him 2% milk.

Exasperated, I didn't even broach the subject of the iron supplements.

So, the next time we went in to visit the doctor, I lied.
Dr: "Is he drinking plenty of whole milk?"
Me: "Yes, he is."
Dr: "Does he like his iron supplements?"
Me: "He loves them."

See? That was easy!

Fast forward to this month, with the DNE, when she told me that I worried about M's bg levels too much, and suggested that I was some sort of control freak. I did not cite the research that I had read about those who had survived diabetes for 75 years or more. I did not say that the evidence shows that long-lived survivors all had tight control over their bg levels, exercised more often, ate more healthfully, and did not waver from 48 to 315 mg/dl in one day.

Instead I said, "Maybe I am."

She gets to be right, and I get left alone. Everybody wins.

And, of course, since I want M to be in that club of people who survive for years and years with this disease, I will continue to ask questions about her bg levels, what she ate, and how she is feeling.

After all, that's my job.

wooo, hoo, hoo, hoo, hoo, hoowooooh-ooh, oohoohooh...

Pump Visit Number Five: Mysteries solved

Have I mentioned that driving in and around Boston is a bit problematic?

That is, the traffic is unpredictable, with swings in perception and mood that cannot be foreseen. As a result, M and I routinely leave 2 hours ahead of our scheduled appointment. Sometimes the journey takes one hour and a quarter from my place of work. More typically it takes about an hour and a half.

Today it took two hours and twenty minutes.

We were ten minutes late.

We had been repeatedly warned that being late for an appointment can result in having to reschedule it, so I was panicked. I don't have time for this again in the near future.

Fortunately, the dire warnings must allow for some traffic-related flexibility. Everyone in the office was telling me not to worry about it.

I was probably still in my traffic-induced anxiety when we were ushered in to see Dr.

Firstly, I want to say that Dr. looks great now that her braces are off.

She also looks really fat in the middle, as if carrying a basketball under her shirt. Apparently this will be child number three for her.

Before M goes in to see the doctor, she typically hands over her bg meter to the nurse, who then gathers information from it via some really cool computer thing. This time, the nurse collected M's insulin pump from her, and apparently gathered a multitude of information from it, printed out the information, and handed it over to Dr.  Dr. looked at the printout of M's readings from her insulin pump.

The good news was that M's A1C was 6.3, the lowest it had ever been. Again, great news, except that it might be due to the many, many episodes of low bg that occurred over the last two weeks.

I expressed my frustration at the insane variation of numbers and lack of control I felt. I began to tear up as I explained how tired I was, how concerned I was that her numbers were dangerously all over the place, and how I am not finding the pump to be any better than the basal-bolus system with Lantus and Humalog.

I told her that I need logic, and while I am trying to make sense of how these numbers can go from one extreme to another, I am growing frustrated, because I can't make heads or tails of it.

Dr. listened and nodded as she looked over M's printout. She was silent, biting her lip as she tried to make sense of the numbers she was seeing.

Then she dropped the bomb.

"M. I think that it is clear that your numbers are higher when you eat a large number of carbs. For example, here, on Sunday (Easter Sunday), you ate 527 carbs in one day." (!!!)

M tried to say that she couldn't have, but Dr. politely stopped her protests. "I see here that you covered for every carb you ate, and that's great. I am really glad you are doing that, but it might be a good idea for you to visit with Karen, our dietician."

She looked at the printout again, and cited other days with high carb amounts (over 200 in a day). She looked at me meaningfully as she explained that M really should try to keep her carb count below 170 per day.

While Dr. was looking at me, I was looking at M with the same meaningful gaze. M and I had had this conversation before. Many times. She typically glared, got angry, got defensive, covered her tracks, and sneaked food. Thank God she always covered for her food with insulin, but I knew she wasn't always telling me the truth when she told me what she ate.

Now we have proof.

M can't hide from the numbers. Because of the pump, which tracks everything for which she boluses, what her bg is, and how much insulin she takes, we can now have a real, honest conversation about managing her diet, and therefore her diabetes.

But she won't like it.

When we first started on this diabetic adventure, M and I were a team. We were going to show diabetes who was boss! And we did. We counted carbs with precision, logged exercise and insulin doses into a cute little book, and learned how to fill her up with low-carb snacks.

But it got old for M. After all, it's not an adventure. It's a hassle having a life-threatening illness. Two years is a long time to keep up one's adventuresome spirit about managing something that you are stuck with for life. There is only so much sugar-free jello one can eat.

Because I am a mom, however, it will never get old for me. I will continue to remind, suggest, and advise (nag, from M's point of view), because I understand the consequences if I don't.

This is where worlds collide.

So yes, we will make our appointment with Karen. It might be good for M to hear the same information from another source besides her annoying mother. And Dr., you might want to start addressing this information to the perfectly capable 13-year-old.

It is she who is ultimately responsible for what goes in her mouth.

Choose your poison.

Pump Visit Number Four: LIVE

We are home now, after a long drive to and from Children's Hospital.

When we scheduled M's insulin pump appointment, we were informed that it was a very special appointment that could only be made on Wednesdays at 8:00 am. This means leaving the house at 6:00 am, but M thinks that it is worth it.

We receive a phone call two days before the appointment that assumes we are slightly less than "all there". We are told to bring a list of items that a diabetic would typically find elementary. While I understand that the nurses at the hospital often have to deal with inept people, I find the list mildly insulting.

Bring:
1) insulin (mentioned twice)
2) the pump (!)
3) an infusion set
4) a reservoir
5) the bg meter
6) a bottle of chardonnay (I am just kidding about that one)

The night before the appointment, we gather all of the needed supplies into a JDRF backpack, and go to bed a little early.

The drive to Children's was trafficky and long, due to a lot of rain, but we arrived safely and on time.

The visit itself was a piece of cake. The DNE reviewed everything that the pump rep had told us last week. May played with more screens, and created her settings for trial and error with the pump.

One interesting fact. She had taken her Lantus the night before. Being that it is a long-lasting insulin, it was still in her system. So how do we make sure that she doesn't get a double dose of insulin? After all, the pump is supposed to feed M a basal rate of 1.35 units per hour. Wouldn't that make her dangerously low?

We learn to set the pump for a temporary basal rate of 0 units per hour for the next 12 hours. Then we start her on her new basal rate tonight.

Sleepless nights are coming again. M has to check her bg at midnight and 3:00 am. Which means I have to get up and check M's bg at midnight and 3:00 am. She will also need to check it before eating, and two hours after eating for the next week or two. Lots of finger sticking, but all for a good cause.

M felt good leaving the office. We began the long, rainy drive back home. Then M got hungry. We stopped at the healthiest place nearby: a Hess station. I got gas for the car, and raided their ice cream selection. I needed something relatively soft. Not only does M have diabetes, but she also has braces.  Which were adjusted yesterday. So her mouth hurt.

Ice cream sandwich: 43 carbs. No. Ben and Jerry's single serve: 29 carbs. Much better.

M smiles as she receives her tiny little gift, with a tiny little spoon in the lid.

Then it hits me. She only has to enter the number 29 into her pump, and BOOM, it's all calculated and dosed. Her first pump-injected insulin is coursing through her system.

This might make life a little easier after all.

Are we live? YEAH!

Pump Visit Number Three: Noisy Tamagotchi

I am not sure how much this episode can be considered a pump visit, but since it involves further education regarding the insulin pump, I decided that it counts.

We have a pump educator come to us to start M on saline.

The pump educator works for the pump company, and tells us that we will want to go to see the DNE in about a week to see how we are doing, and hopefully to get M on the pump "live". In the meantime, where do we live so that she can come to our home to train us and get M started?

We live nowhere near anything.

I ask the nice representative where she is coming from. It is nearly one and a half hours from my home, but a mere 45 minutes from where I work. I ask her if she would like to meet us around 3:00 pm at M's school. I assume that this will be okay with the administrator.

The representative agrees, and the appointment is set for a couple of days away.

We all arrive at the school and set up at a round table in the administrative area of the building. M has brought her infusion set, her reservoir, her bg meter, test strips, and, of course, the pump itself, all stocked up with fresh batteries.

We go through diabetes 101 again, and then the pump rep shows M all of the cool safety features, many of which I had read about.

I think that the pump sounds like a really expensive Tamagotchi. If you don't do something to it on a regular basis, it starts beeping at you. Don't touch it for twelve hours, and an alarm sounds, because it thinks you are in a coma and you need someone to help you.

After all of that, M uses the reservoir to draw out the saline from the vial that the rep gives her. Then she makes sure that the little screw that pushes the insulin out of the reservoir is rewound to the start position. M attaches the infusion set to the reservoir, and the rep realizes that she is our of alcohol swabs.

"They were recalled this week, and I forgot to put new ones in my bag."

Recalled alcohol swabs? Really? I guess the medical profession can't be too careful in our litigious society!

M pokes the infusion set into her body, and she's good to go.

Throughout the training, various people stop to sit and watch, or stand and ask questions. These people include teachers, the principal, and students. Everyone wants to know how M's new toy works, and how it will make her life easier.

M and I found this behavior perfectly normal. Supportive, even. The pump rep had to be put at ease. "Don't worry," I tell her, "This is like our family here." I realized that she may have been concerned about HIPAA, but in reality, these people need to know what all this stuff is on M's body, and what to expect.

So, with a quick quiz at the end of out one and a half hour visit, M is using the pump to calculate carbs, do phantom boluses, and pretend to cover bg highs. All using the miracle of saline.

In another week, she will be using the pump without a net.

At least the batteries for the pump are easier to find than the batteries for this little fella!

The Pump arrives

The pump has arrived!

Since such an expensive piece of equipment requires a signature upon delivery, we opted to have it delivered to M's school. One can never predict when one will be home, but the owners of M's school not only own it, but also occupy the upstairs. Someone is nearly always there.

I received the phone call from Wanda, the school's director, letting me know that the pump has arrived, and that I can pick it up at my convenience.

My husband Bill and I take a drive to the school to pick up the pump. I bribe him to come along by telling him that we can look at motorcycles - an annual spring ritual that sometimes ends up with us actually buying a motorcycle. Being a good husband and father, Bill has sold his last motorcycle when M was diagnosed, so that we could pay her medical bills. The previous one he sold so that we could pay Big Brother's tuition. It's probably about time to get another one.

Bill agrees, and we take the half hour drive to the school to pick up the pump. We nervously leave it in the car while we browse the motorcycle selection. We look at stupid bikes, ugly bikes, and nice bikes. Then we leave so that M can view her new pump.

When she climbs into the car and sees the box, she makes little happy squirrel noises. She wants to rip the box open right then, but we ask her to wait until we get home.

We tear open the box immediately.

Inside is the pump ( a Medtronic Revel), a lot of manuals, a HIPAA policy, four boxes of infusion sets, four boxes of reservoirs, four AAA batteries, a One Touch Ultra Link glucose monitor, and a USB stick.

I had been told by the area rep for the pump company that M would be okay if she wanted to start pressing buttons on the pump. She wouldn't hurt it.

She pulled it out and pressed buttons, while I showed my parents what the infusion sets looked like. They had been reading up, and understood how they worked. I didn't have to explain that the infusion set is not surgically implanted.

Then I pulled out the reservoirs. All of this equipment looked pretty confusing. I figured I would have to read all of the literature that came in the box before I understand it all.

The first booklet of literature was called "The Basics of Insulin Pump Therapy". I read through it. There was no news in there. Check bg a bunch. You will still have to take injections once in a while. Bg is affected by diet and exercise. Basal is the constant insulin, bolus is the insulin you take to cover food that enters your body or to cover a spike in bg. Lows are caused by insulin. This was diabetes 101.

I figured I would learn more in the next booklet, "A Step-By-Step Guide to the Minimed Paradigm REAL-Time Insulin Pump." On page four, I found a diagram of the pump and all its parts and functions.

This helped a lot.

Now I understood what all this other stuff did.

Evidently, we were going to go back to purchasing vials of Humalog, instead of the cartridges that we had been buying for M's super cool insulin pen. The reservoir has a little plunger on it that sucks the insulin out of the vial for easy storage in the pump. According to the information in the booklet, the reservoir should hold about two or three days worth of insulin.

The screens and buttons on the pump can be locked or protected.

There is an airport card that can be given at airport security so that you don't have to remove your pump when you go through screening.

The bg meter will communicate with the pump, which will help it to calculate which dose you should give yourself, but will not administer the insulin until you tell it to.

Cold insulin tends to form air bubbles in the reservoir and the tubing, so it is better to fill your reservoir with insulin that is at room temperature.

There are "alarms" on the pump for empty reservoir, weak battery, failed battery test, and no delivery.

There are "alerts" for low battery and low reservoir.

M has been playing with the buttons. She has put the correct time and date on her meter. She has been wearing it, even though it is not attached to her body yet. She can't wait to show it off.

Now we wait for the trainer to call us to schedule M's "saline start", her week long practice with the pump using saline ( "It's like salt water" she told her grandparents.)

I can hardly wait to learn more about diabetes management with the pump: something I never thought I would have to know, nor did I intend to know anything about.