Monday, March 21, 2011

Five hundred twenty-five thousand six hundred minutes...

How do you measure... measure a year...
In test-strips, in blood-checks, in carb counts, and lots of coffee. In research... in doctors... in insulin vials...

It was March 18, 2010 when we learned Sarah has diabetes. What a year it has been, and I honestly can't say it's been a bad year. Challenging? Yes - but not bad. I am so amazingly proud of Sarah. She's such a trooper. Once she got home from the hospital she pretty much seemed to just accept the changes in her life. She just keeps moving forward without complaint. I think the fact that she's so busy probably helped a lot.

That said, I need to reiterate a few facts about diabetes.
  • It's pretty much invisible - Sarah looks and acts just like any other child, except when her blood sugar is far out of whack. But that doesn't mean she doesn't have a serious disease that requires extreme and constant intervention in her bodily processes to keep her healthy.
  • Keeping her blood sugar in check is a 24 hour per day process. She tests usually 7-10 times every single day, and we make constant adjustments to improve her control. Even then, it's not a perfect science and she has high and low blood sugars on a fairly regular basis.
  • There's no "cure" (yet). She can't just eat right or exercise more. Even a handful of carrots or peas will throw her blood sugar into the 200's range if she doesn't take insulin with it.
  • There are severe complications to worry about. Many type 1 diabetics do amazingly well, but this takes a LOT of effort. Too many more suffer severe complications including heart problems, kidney failure, loss of vision, nerve damage, stroke. In the last year I've met two parents of type 1 diabetics who died in their late 20's and mid 30's. My point isn't to scare anyone, but to remind that although you can't see the severity of diabetes, it's there.
  • Children (and adults of all ages) die from type 1 diabetes. It's not common and it doesn't happen everyday - but it happens with enough regularity that it bears mentioning.
  • Type 1 and type 2 diabetes are extremely serious conditions and need a cure. One in three people are at risk for developing diabetes in their lifetime. Someone in your family has, or will have, this disease if we don't find a cure.
That said, I am incredibly proud of Sarah for managing her diabetes so well and not letting it slow her down. Here's a brief synopsis of her very busy year:

March 18, 2010 - diagnosed on a Thursday. She was about 68 pounds at diagnosis, and had lost 5-10 pounds over the previous months. I took this picture of her about three weeks before she was diagnosed.
February 25, 2010

March 22 - back to school. The school nurse (who handles about 10 schools) had to visit Sarah's school every day to give her a shot before lunch. She also returned to theater practice today, learning her lines and her songs for Runaway Stage Productions Cinderella Kids. Within two weeks Sarah, who had been seriously needlephobic her whole life, was giving herself shots everyday at school.

May - Sarah performed wonderfully as Cinderella. Diabetes didn't slow her down at all. I packed lots of snacks, and checked her blood sugar during each intermission.
Sarah as Cinderella

The day after Cinderella ended, we flew to Ohio to a memorial for my grandfather. Sarah had a wonderful time and miraculously didn't have any serious blood sugar issues.
Sarah and cousin Simon, May 2010
From Ohio we traveled by train to spend a few days in Washington D.C. This was a little more challenging because we were forced to eat in restaurants. I believe we experienced our first "high" blood sugar, somewhere in the high 300's, while we were in D.C. At the time it was a "freak out" moment for me, but since then I've learned to roll with the occasional 300's. As long as we catch them quickly and provide the right amount of insulin, they are short lived.

Sarah and her grammy, resting their achy feet in D.C.
July, 2010 - When we got home, Sarah went straight into practice for her next show, Guys and Dolls - in which she was cast as a "hotbox girl" (third from left). She had a blast dancing up a storm.

September, 2010 - Following Guys and Dolls, she was cast as a homeless girl in Rent - School Edition. She did a great job and had a lot of fun in this challenging production.

October, 2010 - Sarah sang "Candle on the Water" at the American Diabetes Association's Sacramento walk to STOP diabetes.

November, 2010 - Following Rent - she went straight into Music Man, where she played both the part of the old woman in the American Gothic painting, and a teenage girl.
December, 2010 - Sarah sang 15 songs at a party put on by the U.C. Davis MIND Institute.

January, 2011 - Sarah played an Ancestor in Mulan.
March, 2011 - Sarah and I traveled to Washington D.C. to appeal to Congress to continue to fund diabetes research. We spent our last day there with Sarah's penpal, Megan (who also has type 1 diabetes). Both girls were ecstatically happy!
Sarah is currently working on Seussical, in which she plays the part of Yertle the Turtle.

So, as they say, life goes on. It's a different life than I wished for her. I try so hard not to smother her, but it's a constant challenge. I know that she can have a serious "low" blood sugar with very little warning, so everyday I walk a fine line between being available and ready if she needs me, and being too close.

Sarah is excited about growing into a more serious advocacy role. She wants the opportunity to help other kids newly diagnosed see that they can continue to be just as active and involved in life as before their diagnosis, with a few necessary changes to ensure continued health.

So here's to year one accomplishments. I am looking forward to watching Sarah grow and mature and use her powers to help others.

Sarah, you are my hero!