Help with wording

Wow.  I just got an amazing email from Aaron's dance instructor.  (I'm an unofficial volunteer very part-time manager for the studio, so the director and I shoot email back and forth all the time.)

Background:  Most of you know----my 16-year-old son was diagnosed T1 a year ago.  He is a dancer.  In fact, this year, he takes more classes (7 plus one as a teaching assistant to 1st graders) that anyone at the studio and will be performing in 9 out of  11 pieces in the recital next weekend.

The director is finally getting it about how hard my son works at being a dancer with T1.  Last year when I tried to talk to her about issues regarding T1 and the recital, it was as if she put her hands over her ears and went LALALALALA out loud.  She couldn't be responsible, she couldn't think about it, etc.  It wasn't that she didn't care.  She's worked with my son since he was five years old and hand picked him to be a class assistant for the past three years.  She cared too much and couldn't process.  She's also artistic/flighty--if you know what I mean.

We've been talking about recital because the recital this year is such that he can barely handle costume changes---no time for blood sugar checks, juice, etc, except at intermission (one hour/intermission/one hour).   We talked to the endocrinologist at check-up today about blood sugar goal for preshow, etc.  The dance director and my son decided that except right before intermission and right before the last number, he won't take curtain calls.  He's very cool with that.

Then I get this email from her just now:

"....When that dance is over, I will call all the men of the studio out onto stage to recognize them.  This will give the girls of that last piece a chance to change their costumes.  Also, Aaron has said it's ok to recognize him as the person in the most dances.  He also says it is ok to speak about diabetes.  I need help from both of  you to prepare comments that would be appropriate--raise awareness and  help educate and at the same time, recognize Aaron for what he's doing."

Wow!  It's amazing that she is asking for this.  But I don't know what to say.  (I'm exhausted from the big one-year check-up today plus three hours of driving.)  He takes more classes than anyone.  Obviously isn't held back or limited by his diabetes.  Yet, must work even harder to keep his body in diabetic shape for dancing.  Must work to have blood sugar at certain levels for the demands of class by counting the carbs of everything he eats.  Has learned to listen to his body to keep himself safe.  Taken responsibility to care for his blood sugar as needed.  Must prick his finger and check his blood sugar before, after and every hour of dance, plus any time something doesn't feel right.?????????

I don't know how much she wants to say.  What to say?  Concisely?  And strike that balance of not boring people but creating a little awareness of T1 demands.  So please, make suggestions of eloquently written sentences that would sound good from the stage.

 

I tried to close my eyes for a few minutes and couldn't stop thinking.  Maybe the important thing about awareness is sticking to the basics.  There was no way to prevent getting this disease.  He will not outgrow it.  There is no cure.  Yet!

But still, how to concisely phrase for the unknowing public the amount of work it takes to do what he does as a T1 dancer?

Or that the really hard thing about being a teenager with diabetes is keeping control NOW to prevent destruction years Later.

Type 1 diabetes is a non-discriminatory chronic illness. It affects those of all races, age, and gender. Type 1 diabetes is an autoimmune disorder in which a person's own immune system attacks the cells in their body that produce insulin. More than one million Americans have type 1 diabetes; it’s a disease that strikes suddenly and lasts a lifetime. It has no cure. Living with type 1 diabetes also brings with it the risk of complications:  it carries the constant threat of heart disease, stroke, blindness, kidney failure, and amputation. Dr. Martin Luther King, Jr. said our lives begin to end the day we become silent about things that matter. I can’t be silent. Diabetes matters to me. A year ago, type 1 diabetes changed my life. While I still dance, go to school, and spend time with my friends as other 16 year olds do, I also have added responsibilities. I test my blood sugar ____ times a day, and I take ____ shots every day (or wear an insulin pump that continuously infuses insulin into my body) just to keep myself alive. However, I don't let diabetes stop me. I have continued to work hard as a dancer and have even added to my responsibilities. I performed in 9 of the 11 routines today and have helped assist with teaching 1st graders the joy of dancing. Diabetes does not slow me down or prevent me from acheiving the goals I have set for myself - I just have to work a little harder to get there. (You can insert something about his dance and diabetes routine here.) 

if you don't like the MLK quote, i have an eleanor roosevelt one (or a million of them).

Well said C. 

My only addition might be a comment directed at those T1Ds in the audience or parents of T1Ds who think there are limits. The message is that there are none. Speaking may help one or more T1Ds' in the audience step out and up to go for it., dance, american idol, or the supreme court.

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My only addition might be a comment directed at those T1Ds in the audience or parents of T1Ds who think there are limits. The message is that there are none. Speaking may help one or more T1Ds' in the audience step out and up to go for it., dance, american idol, or the supreme court.

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agreed!

i wouldn't include the complications. I feel like, although important, they're less pertinent to the audience, who wants to hear about him now; how D has affected him as a dancer, not how it might affect him in the future. otherwise that sounds great!

C--As always you are beautiful!  Thanks a million!!!

Angie

you're welcome :o) let us know how it goes for him! we're always happy to hear about other t1's  sharing their lives with others.

Hi Angie!

My suggestion would be to focus on the discipline and conscientious it takes to maintain the balance between diet, exercise and insulin. I agree with C on briefly defining type 1 diabetes, since a lot of people still don't understand the difference between type 1 and 2.  Your son has obviously worked very hard to achieve his goals and stay healthy in the process. This desire to not let diabetes dictate the course of his life is truly inspirational and should be emphasized. 

Best of luck and let us know how it goes!

My daughter is a dancer; I would recommend laying everything out backstage in an area just for him.  Testing a BG only takes seconds if everything is laid out.  Have juice or soda - something he can drink quickly.  Likewise, have insulin ready.  My daughter wears a pump and we have always disconnected, reconnected between dances but now she wears an omnipod, our biggest challenge will be where to put it under her costume.