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!

Saturday, March 19, 2011

Reflections on our trip to Congress

Earlier this month, Sarah and I woke up ridiculously early on Tuesday and began a fantastic, whirlwind journey to Washington DC to bring our story to those whose job is to represent us. Sarah and I went to tell her story, a story about a little girl without a care in the world. A girl who loves to dance, and sing, and play boardgames. A little girl like so many who just love life, love living, and who inspire smiles wherever they go. A little girl who woke up a year ago and found that the world isn't fair, and that serious illnesses aren't only for the elderly. A little girl with type 1 diabetes.

Wednesday morning we woke early and spent some time preparing for our first meetings with the American Diabetes Association. Sarah was so excited! We ate breakfast in our hotelroom (bowls of cereal from the pharmacy down the street) and wandered the shops in the hotel until it was FINALLY time to check in with the American Diabetes Association. Sarah and I checked in and were provided with a t-shirt, a lanyard, and an over the shoulder bag stuffed with paperwork.

Sarah went right to work, opening the bag and previewing the contents.

In the afternoon, the real work began, and we found ourselves in a conference center full of men, women, and children of all ages, all races, all sizes. Many had diabetes, either type 1 or type 2, others were in the healthcare profession, and others were there to honor a loved one. The speakers were inspiring, and simultaneously heart-wrenching. One fact stuck out to me above all the others.

A focus group at the capital surveyed our lawmakers and found that overall they do not see diabetes as a serious issue.

I ask myself, how is this even possible? Diabetes, in its various forms, takes a tremendous toll on families. It's an immensely costly disease, requiring constant and ongoing medical treatment, and when complications arise, much more.

The thing about diabetes which is similarly wonderful and terrible, is its invisibility. I know, and have known, a lot of people with diabetes in my life - and until my own daughter was struck with diabetes, I have to admit, I didn't think it was that serious either. My grandpa had diabetes. He always had a meter on his table, I was told he took insulin (I don't remember ever seeing this), and candy and sugary drinks were always present. To me it seemed a small part of his daily life. Now I am consumed with learning and managing Sarah's diabetes. I even had a dream last night that she took her insulin pump off to take a shower, and then couldn't find it. Have you ever had a nightmare that locks your jaw, tightens your muscles, and ultimately wakes you from sheer terror? I felt that, over a missing insulin pump. How crazy is that?

But far beyond my own experience is the stone cold facts about diabetes. Over 26 million children and adults in the US have diabetes - about 5% of these have type 1 diabetes, like Sarah. The cost in 2007 to treat diabetes related complications in the U.S. was over $2 billion!

So we went to Capitol Hill. We talked met in Senators Diane Feinstein's, Barbara Boxer, and Dan Lungren's offices and told our story. Sarah told Diane Feinstein's aide how she was "afraid she was going to die" when she was diagnosed (pretty much ripping my heart out). We walked to several other offices and dropped off material, taking a few moments at each to tell our story and explain why we were there. Representative Tom McClintock heard me speaking to his chief of staff, and came out to introduce himself and give me a few moments of his time. He even brought us into his office for a few pictures.

Though the day was tremendously rainy, nothing could dampen our spirits. We were on a mission!
It was an amazing journey and we met so many wonderful people, including Marianne, who writes a blog called, which is dedicated to strong women dealing with the challenges of diabetes. What an amazing role model for my little girl!
In closing, this was a remarkable experience. Sarah and I both had a wonderful time, and an opportunity to share with our representatives the seriousness of diabetes. Sarah and I both came away energized and ready to begin preparing for further advocacy in California. We registered for the ADA's annual walk and Sarah is planning a variety of fundraising opportunities. Please visit our Step-Out page and donate generously, or better yet - come with us! We'd love to have you join our team.

Saturday, March 5, 2011

Call to Congress - Getting our story to the press

Following is the press release prepared for our trip to Washington D.C. next week.

For Immediate Release:
Contact: Tonya M. Gonzalez
Pictured: Amanda (19), Sarah (11)

California Diabetes Advocates to Visit Washington, D.C. to Urge Greater Federal Funding in the Effort to Stop Diabetes®

Sacramento, CA, February 24, 2011

– In an effort to Stop Diabetes and the devastating effects of this disease in our community, Tonya Gonzalez and Sarah Gonzalez, diabetes advocacy leaders in Sacramento, CA, will join more than 200 diabetes advocates from across the country in Washington, D.C. for the American Diabetes Association’s Call to Congress. Call to Congress is the Association’s premier national advocacy effort and this year’s event will be held March 9 – March 11, 2011.

Attendees will include children and adults with type 1 and type 2 diabetes, family members of individuals with diabetes, researchers and other health care professionals. All are committed to advocacy efforts at the local, state, and national levels. Gonzalez is the mother of eleven year old Sarah. Sarah was diagnosed with type 1 diabetes in March 2010.

Gonzalez and the other advocates will meet with Members of Congress on March 10

th to urge them to support federal funding levels in Fiscal Year (FY) 2012 for diabetes research and prevention programs at the National Institutes of Health and the Centers for Disease Control and Prevention that recognize the magnitude of the nation’s diabetes epidemic. Of the nearly 26 million Americans living with diabetes, more than 2.3 million of them are residents of California. The advocates will also urge their Members of Congress to join the Congressional Diabetes Caucuses, which act to educate Members about diabetes and to support legislation that improves diabetes, research, education and treatment. While in Washington, DC, Gonzalez will also collaborate with other Call to Congress participants from around the country to plan diabetes advocacy efforts back home in their communities.

“Call to Congress brings Diabetes Advocates from across the country together in the movement to Stop Diabetes and provides them with the opportunity to tell our federal government how important it is to fight this deadly epidemic,” said John Griffin, Jr., the Chair of the Board of the American Diabetes Association. “The Centers for Disease Control and Prevention projects that one in three children born in the year 2000 will develop diabetes in their lifetime unless our country changes it course . Congress must provide the funding and leadership necessary to invest in research and ultimately save lives.”

Diabetes is a growing epidemic and is taking a devastating physical, emotional and financial toll on our country. The national price tag for diabetes is at an astounding $174 billion per year and that cost is estimated to almost triple in the next 25 years. Factoring in the additional costs of undiagnosed diabetes, prediabetes, and gestational diabetes brings the total diabetes-related cost to $218 billion.

For more information about Call to Congress, please visit

About The American Diabetes Association

The American Diabetes Association is leading the fight to stop diabetes and its deadly consequences