Thursday, September 2, 2010

When the worst happens...

by Michelle Alswager

Dealing with loss.
“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.

I copied this article from DLife. There are so many true statements in it that I had to re-post and share here. In my opinion, Michelle is truly amazing. I don't know if I could have her strength if faced with her reality.
To top it off... I read this after reading Reyna's post this morning called "The painful truth of my nights'. In this post she talks about her fears in the night time hours (not something she does often). She also talks about "dead in bed syndrom' which is a fear MANY of us have. Click on both links to take a look. Harsh reality, but a good read that reminds us we are not alone. 


Unknown said...

I read this for the first time's so hard to acknowledge this reality.

I'm so happy we have each other.

Tammy said...

Thank you for sharing. My heart goes out to families who've lost their children.

It's easy to block out that possibility in the midst of caring for my son. But it makes me all that much more convinced that the best gift I can give my son is his health. And I need to keep being anal retentive if I have to.

Cindy said...

Thanks for sharing this! This is why so many of us wake up at 3 in the morning to poke tiny fingers. Hopefully spreading awareness of what can happen will help others prevent it from happening to their little ones!

Unknown said...

Wow is this story that haunts me. To know that I can do everything in my power to care for Joe daily for 10 years after his diagnosis and he still could die...there are simply no words for the emotion that fills my heart at the thought of it. This woman and her family are on my mind frequently. Thank you for sharing.

Michelle said...

Thank you for sharing our story. Reyna is right - it wasn't that anyone did anything "wrong" at my house, no, it is just a reality that happens to some. But not all. Thankfully.

Tracy said...

While I may not have chosen, or wanted this path in life, I am SO thankful to have so many wonderful friends to go through it all with.

Amazing story. Thanks for re-posting it, Lora.

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