When the Worst Happens
Dealing with loss.
October 2010 — "I've always been a risk taker, just like my mom," writes Jesse Alswager in a school writing project.
March 3, 2000 was by far the worst day of my life. My world was about to turn upside down as my adorable little 3-year-old son, Jesse, was diagnosed with type 1 diabetes. I couldn't ignore the symptoms and had taken him to the emergency room. I will never forget the look on the nurse's face as she read the glucose meter. "It's diabetes, isn't it?" I asked with dread. She simply nodded.
Like everything in my life, I took this on with passion. Over the next 10 years I would advocate, I would teach, I would learn, and I would find ways to help others cope with this disease.
Just shy of 10 years of his diagnosis, Jesse died unexpectedly from his type 1 diabetes. March 3, 2000 was now a distant second "worst day of my life" as I watched my 13-year-old slip away. The outcry from the diabetes community was loud. "How could this happen?" "Weren't they a good family?" "Can this happen to my child?" Answers were demanded, and I could give none other than he was an amazing kid full of life who didn't let diabetes stop him. We are still left asking, "Why?"
Loss in our own community – the tight-knit diabetes community – is shocking. You look to one another and fear it can happen to your kids. Just weeks after my son died, a wonderful 14-year-old boy named Trent died from low blood sugar in his sleep. I had never met his parents, but found myself drawn to them – to help them. The unthinkable had happened to both of our families. I was also fortunate enough – yes, I said fortunate enough – to know two other women who had lost their children to type 1 diabetes 4 years ago (Austin, age 22) and 2 years ago (Seth, age 23). I was shocked there were so many deaths in our community – were we so busy telling people diabetes doesn't have to be a death sentence that we actually stopped thinking it could really happen?
What was most distressing to me was that friends of mine who had children with diabetes were not telling their children about Jesse's death, afraid they would fear for their own mortality. I can tell you from experience that it is better to tell them, because they most likely know what happened and will suffer through fear of death until you take the time to explain that it was a tragedy and that it doesn't happen all the time.
There is nothing I would change about the way Jesse lived his life, the technology we used, and the freedom we gave him to be the boy he was. I choose to honor him by continuing my passion in the diabetes world and to help anyone I can. I think it is important to keep perspective that diabetes is a delicate balance and when we hear, "insulin is not a cure," it's not just a statement. It's a bitter reality.
I leave you as I started this column, with Jesse's words: "I've always been a risk taker, just like my mom." Continue to let your children with diabetes thrive and live and take risks. Jesse would want them to do so.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
As I mentioned in an earlier post, one of the benefits that made it cost-effective for me to go with the real healthcare (HSA) plan rather than the phony (HRA) plan is that my company is now covering "preventative" medicines at $0 copay. The formulary for these, as stated by CVS/Caremark (my pharmacy benefits provider), covers all test strips, lancets, and control solutions. I dutifully get my doctor to write up prescriptions for all of my testing needs, submit...