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.

Glimmers of Maturity

M went to the Winter Weekend last week.

This program is especially for teens with diabetes. This year about 35 kids with diabetes spent the weekend in Vermont playing games, doing ropes courses, having a dance, and listening to adults with diabetes explain how they manage their disease.

There was a power lifter. There was a triathlete.

M reunited with some of her friends from summer camp, and also met some new ones.

Of course she had a good time. She's M. She loves people and new experiences.

Flash back to camp time: I pick up the flier about the Winter Weekend and ask M if she'd like to go. She shakes her head in distaste. "No, I am just not into that."

I signed her up anyway.

I am thinking that she seems to burn out on having diabetes every few months, and that this might be a chance for her to recharge her diabetic-management batteries.

Needless to say, I am smugly congratulating myself on being right about that one. She thanked me repeatedly on the way home.

At pick up time, there was a parent meeting, in which we heard about the kids' weekend as well as what resources are out there for parents and children with diabetes.

There was one program that caught my eye, but I didn't think that M would go for it. It is a program called STAR: Steps Toward Adult Responsibility. The program matches teens with mentors who are managing chronic illnesses in college. The illness does not have to be diabetes, but includes chron's disease, celiac, and other ailments that do not go away. As I listened to the college student in charge of the program, I thought I might talk to M about about checking it out in the car ride home.

The ride home was fun. M told me some stories, shared what the speakers were saying, and how it affected her. Then she mentioned the STAR program, and told me that she had signed up to be on their e-mail list, and can we start going to their monthly meetings?

I drove on, amazed as my daughter explained that she thinks that she needs support more than every six months, and that she thinks the program will really help her stay on track and keep a positive attitude.

Will wonders never cease?

But, just so you know that M is still M, she is begging us to buy her some girl scout cookies this year.

Because they are yummy.

Charlie Kimball

Almost immediately after M was diagnosed with Type 1 diabetes, Bill and I learned that recently confirmed Supreme Court Justice Sonia Sotomayor also had Type 1. We were excited to be able to hold up a prominent role model with Type 1, so that M could see that, even living with Type 1, many possibilities were within her reach.

Sorry Sonia, just not cool enough for an 11-year-old. WE love you, though!

Unfortunately, M was 11 years old at the time, and a supreme court justice with Type 1 did not impress her.

Nick Jonas, on the other hand, did.

At least M notices you, Nick. Even if she prefers your brother.

She watched the Jonas Brothers TV show, and although she preferred Kevin, she admired Nick's handling of the disease. She even bought the Nick Jonas dog tags that helped support diabetic research. And she wore them almost every day.

A few months later she heard about Brett Michaels, some old 1980's rock star, who had Type 1, and she thought it was nice that he won Celebrity Apprentice and donated his winnings to the American Diabetes Association.

Live to rock, rock to live, Baby!

But this year, her father learned about a race car driver who had Type 1. Being a car guy and a mechanical engineer, he found the story of a man driving a car at over 200 miles per hour while managing his bg fascinating.

The man's name is Charlie Kimball.

"Hi, I'm Charlie Kimball!"

Now, if you think that what M goes through every day sounds like a royal pain, you should hear what a normal day at work looks like for this guy.

When she turns 16, M will have to check her bg before starting her car each and every time that she drives. This is so M can treat herself prior to operating the machine if she needs to. If she does lose consciousness, she might hit a tree, or another person/car/cat, and someone could be hurt or killed.

If Charlie has a dangerous low on an ordinary work day, he will likely do millions of dollars in damage to many cars, and most certainly injure or kill someone along the way. Charlie says that no one in the race circuits has ever expressed concerns about his diabetes. I suspect that they really don't understand the disease.

Of course, Charlie is VERY responsible and keeps a doctor on staff in the pits with him.

Instead of a water tank in the car, Charlie has a water tank AND a sugar-water tank, in case his bg slips down a little.

Well, you may be thinking, how does he know what his bg is? It's not as if he can pull over and check his bg with a lancet and some test strips. Well, Charlie has a CGM (continuous glucose monitoring device). This nifty device constantly reads bg, and indicates a trend line showing whether his bg is climbing or descending. Pretty nifty, huh? He straps the monitor to his steering wheel, and calls out his bg readings to his doctor over his headset. She then lets him know what corrective actions to take, if any.

I cannot imagine trying to drive 185 mph, two feet away from 35 other cars while managing any health problem, so my hat goes off to Charlie. Our whole family is - in the New England vernacular - "wicked impressed."

While at diabetes camp, M has heard from skiers and bicyclists who talked to campers about managing their Type 1 while pursuing their athletic dreams. This year, it was Charlie Kimball who came to speak to them.

M loved him. She said that he was interesting, kind, engaging, and that he was smart enough to know to repeat some of the quieter questions from the crowd so that everyone could hear.

As a mother, I appreciate Charlie Kimball. He has faced his diagnosis without fear, and has embraced the diabetic community. He, although diagnosed just four short years ago, has begun giving back to that community.

I wish Charlie the best of luck. Our whole family will be watching him!

Diabetes camp

" I'm having tons of fun. What are you guys up to? I feel so happy that I have a new friend and a new way of looking at things (I'll tell you about it when I get back) LOVE YOU! - M

So read one of the two communications I received from M while she was at diabetes camp. The other one was similarly brief.


This one, however, gave me hope. M was at camp after a rough period of feeling frustrated with the disease and the way it interfered with her life. She was not doing what she needed to do. She was not checking her bg, nor eating properly. Diabetes camp couldn't have come at a better time.

She was clearly having fun, because she didn't bother to write (despite the several self-addressed stamped envelopes I had given her).

But the words I clung to the most strongly were, "I have... a new way of looking at things".

"Hooray!", I thought. Diabetes camp is just what she needed. Her attitude about the disease is improving! She will feel better about herself and her ability to manage the disease! This is wonderful!

I pictured her having deep, heartfelt conversations with fellow diabetics while doing crafts, fishing, swimming, and generally goofing off.

I spent days holding these images in my mind.

After M had been home for a couple of days, she came outside to sit on the porch with me and her father.

I asked, "So, what is your whole new way of looking at things?"

"What?"

"In your post card, you said that you had a new way of looking at things."

"I did?"

"Yes, you did."

"Oh, yeah. I don't remember."

Sigh.

Teenagers.

Lions and Angels

After M was diagnosed, several people told me that I simply must send her to diabetes camp, that it did wonders for their child, niece, grandson, the neighbor's kid.

The fact of the matter was that M was diagnosed at a very inconvenient time. Inconvenient because a) I was broke, and b) camp sign-ups were already done for the year.

A buddy of mine from church also asked if I was planning to send M to diabetes camp. I told her that I would like to the following year, but I wasn't sure if I would or not. She was wise enough to read between the lines, and told me that she was part of the Lion's Club. These are the same people that collect old pairs of glasses to help people who can't otherwise afford them. She said that they usually have scholarships for kids going to diabetes camp. I told her I would keep it in mind for the following year.

The following year, my buddy reminded me to apply for a scholarship for M. I didn't think we'd qualify, and I was afraid that even if we did, we would not be able to pay the balance. We were getting by, but things were really tight. I thought we might have to pass up camp again this year.

Then Auntie Jeanne stepped in.

Auntie Jeanne is M's godmother, guardian angel, and fantastic human being. In fact, when I discuss her with people outside our shared social circle, I refer to her as "Auntie Jeanne" so that she will not be mixed up with any of the other, less important, Jeannes in my life.

Auntie Jeanne offered to pay for a large chunk of M's diabetes camp.

I cried.

Then I applied for the scholarship.

The Lion's club paid $900 of M's camper fees, leaving only $300. Jeanne paid the balance.

I am so grateful for groups like the Lion's club, who make it possible for kids like mine to attend a camp that would otherwise be out of their reach.

I wept again after dropping M off at camp, so grateful that my daughter would have this opportunity to be with other kids who had to watch what they eat and inject themselves with insulin. I am not glad that there were so many of them, but I was glad that they weren't alone: that they had to explain nothing to anyone. Although the focus of camp is diabetes, in some ways it is like a diabetic vacation.

M was a big hit at diabetes camp. She went bass fishing, wrote at the camp newspaper, made videos, went swimming, and generally had a ball. People hugged her like mad when she left.

And she can't wait to go back.

Alivabetes

A student is selling silicone bracelets in the hallway at the school where I teach. You know, the kinds like the yellow "Livestrong" bracelets for cancer. I distinctly heard him say "diabetes camp". I asked the young man who was going to diabetes camp. He said that his sister and his cousin were both trying to raise money to go.

Which camp? Camp Carefree. This is where M went to camp last year. It was a great experience for her to spend two weeks being "normal" with other kids with diabetes.

I examined the bracelet. It was white and green and had the word "Alivabetes".  I bought one. I read the card that came with it. "When 8 year old Jocelyn was diagnosed with diabetes, she asked if she was going to die. The doctor told her no, so she decided that they should call it alivabetes"

Cool.

To order one or more of these bracelets to support Jocelyn and other kids going to Camp Carefree, you can go to http://funsantamail.com/Alivabetes.html