Ten Years and Counting

by Sandra Silvestri

When JDRF asked me to author an article to newly diagnosed families, I must admit I felt a bit reticent. November 29th was the 10-year anniversary of my son's diagnosis. I don't feel "newly diagnosed" anymore. But the more I thought about it, the more I understood that my life since that awful Sunday morning in November might provide a newly diagnosed family with some hope, a little comfort, and maybe even a course of action.

The circumstances of my son's diagnosis were dramatic and terrifying. With blood sugars in the 1100's and severe dehydration, my child began his type 1 diabetic life in the ICU with visits from family pastors preparing us for his death. But he was a strong little two-year-old and he made it through his crisis. The next two years were filled with the daily details of type 1 diabetes (juvenile diabetes) that every parent with a child with type 1 diabetes faces; shots, insulin reactions, blood tests, and angry conversations about how much food he could eat and when. Every so often a family member or friend would suggest I seek out other families with type 1 diabetes for support. But type 1 diabetes was not a "club" that I wished to join. I did not want to hear how others coped. I only wanted to survive.

As Joey grew and we began to face the challenges of school and life outside of our home, I began to yearn for something more than daily survival. Coincidentally, my husband gave me a computer for Christmas. I think he hoped that I would find my way into the 20th century. But I don't think he anticipated the way his gift would change all of our lives. One of the first words that I typed into my computer was the word "diabetes". With the click of my mouse, my world opened up. Thousands of diabetes Web sites appeared and within days I was talking to others with the same questions and the same concerns I had. One night when Joe had his first stomach flu, my "cyber-friends" stayed online with me through the entire ordeal.

Since that time I have used my computer for every imaginable activity to search for a cure for my son. I ran JDRF's 1999 Children's Congress from a tiny desk in my living room, even taking the name "ChairMom" from my online life. I have done my homework for lay review and written many articles and letters for JDRF and even the NIH. I have contacted senators and the White House from JDRF's legislative alerts. This computer has allowed me to stay connected to the world while staying with my family. Most importantly, it has given me a tool to fight back against the loss my son and our family suffered on that November morning.

Many things have changed in 10 years of type 1 diabetes but not the most important thing. Joe still has type 1 diabetes. He is a thriving 12-year-old who spends the night at friends' houses, plays baseball and soccer, goes to science camp, and snowboards off mountain tops. He now wears a pump and he is beginning to speak about type 1 diabetes in the first person without my assistance. In essence he is growing up with type 1 diabetes. I hate that sentence but I understand that all we can do is fight back. JDRF and this computer are my tools for the battle and it is a battle I urge you to join. We are all draftees in this war on type 1 diabetes and just like the current war on terrorism we must use all of our wits and all of our resources to fight back. I hope you find solace in your efforts whether they are through face-to-face contacts like Chapter work or the Walk or searching and reaching out online. There is comfort in action, no matter what the course.

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