That's my kid, a cute, young, but fast maturing little girl who carries a burden few adults would know how to manage, and does so brilliantly. She's smart, she's fun, her laugh is intoxicating, and her outlook on life is uber positive and bouncy in a way that only Tigger and she could pull off. Most of the time.
Then there are days like today. Days when she's tired after being woken up every three hours to treat a near low with milk or juice followed by a snack. Sure, most kids would dance the Light Fantastic at getting a middle of the night snack, but when it's meant to save your life, when your tongue is stuck to the roof of your mouth with the worst case of dry mouth imaginable, and you have to eat this snack right now whether you want to or not - that just simply begins to suck. Especially when your mom stops making sense and exhibits only one mood, the irritability of sleep deprivation.
We're both beyond tired, and even so, most days we're grateful for all that we have, for the fact that her disease is manageable.On the mornings that follow extreme trials of sleep deprivation, it can be hard to dip into the well of gratitude. Still, we persevere, and I for one am grateful. Grateful that cell phones offer multiple alarms, thankful that my son knows how to download the most obnoxious music designed to wake the dead, and mostly, filled with a deep sense of blissfilled thanks to our guardian angels (who I swear pushed me off the bed) that she woke from another night of uncertainty.
Since November 1st, Type 1 Diabetes Day, the diabetes community has continually struggled with and debated the merits of an ad run by the JDRF in the Washington Post and the New York Times. Take a look for yourself:
I realize the text of the ad came out a bit blurry and difficult to read, but I'm sure you noticed the startling statistic. 1IN 20 TYPE 1 DIABETICS DIE FROM LOW BLOOD SUGAR.
That's a startling, appalling, alarming statistic, and it's caused quite an outcry in diabetes circles. The debate centers around the the statistic, and the perception of statistical manipulation or fear mongering versus an honest and necessary attempt to help people truly understand that Type 1 Diabetes is a serious, often devastating disease, with debilitating effects on one's health over time.
I've spent days reading and listening to parents of children with type 1 diabetes decry the morally reprehensible lobbying tactics utilized in this ad. I've researched, sifted through study after study, looked at current data, and the facts remain - muddy, obscured. Yes, treatment options have come a long, long way baby. Those with type 1 who have access to these treatment options likely face better outcomes than those patients in the studies used by JDRF to arrive at this startling statistic.
At the same time, the number of children diagnosed with type 1 diabetes increased exponentially over the last 5 years, and continues to do so. Researchers don't understand why, but this will put a strain on the availability of treatment resources. Those of us with children who have type 1 diabetes need to be aware that the prevalence of this autoimmune disease is fast outpacing both the resources we currently have, and the rate of research for better treatment options and a cure, particularly in our country where research seems all but stagnant.
The truth is, it isn't about the statistic at all. It's about the fact that children and adults with type 1 diabetes suffer hypoglycemic events every single day, and those cause destruction to the neurological system. It's about how incredibly hard type 1 diabetics, and their families, work to negate that, and to ensure that the type 1 diabetic leads as normal and healthy a life as those without this disease. It's about the countless hours of lost sleep, the constant state of awareness and emergency preparedness that type 1 diabetics live with every hour of every day. It's about what could happen, and does happen, should we decide we want and need a break from this - because the truth is, diabetes takes no breaks. It doesn't wait for lunch time, honor holidays, recognize you have a test or a presentation, or care that your school health para (or even your dad) stinks at math. Every minute of every day, and night, counts - sometimes it makes the difference.
The fact is, in other countries, corporations like U.S. based Medtronic offer technological tools designed to reduce the burden on, and increase the safety of, type 1 diabetics. Tools that are not available in the U.S., and that the FDA will not yet consider until years of further testing are concluded. You might think this is due to safety concerns, but the truth is it's not. If people don't realize that Type 1 diabetes is really all that serious, that people die from it and suffer debilitating health concerns as a result of years of insulin dependence, then no one is going to lobby and push for research funding in this area. Sure, the statistic, the ad, they feel alarmist, and they're meant to. Our country is currently light years behind the European Union in research and innovation in the area of diabetes - a disease that already accounts for a high percentage of all health care costs in our nation.
Think about our night that I briefly shared - that was mild. Multiply that times 365 nights a year, and take that times 30 million - the number of people in the U.S. alone that have type 1 diabetes. Chances are, you know someone who isn't going to sleep well tonight, who is afraid they or their child may not wake up tomorrow. Is it really so wrong that the JDRF is pushing the FDA to release guidelines that will allow research in our country to move forward? I didn't think so.
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