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Kudos For Courageous Living

November 13, 2014

I’ve nominated Nikkobetes for an Edublogs Award (#Eddie14) because my son has lived courageously and out loud with Type 1 diabetes for almost 14 years. During the first few years, as a mere toddler, when he was on insulin shots, people looked at us as though we were shooting our kid up in public. There were many long, sleepless nights, trying either to get his blood sugar back up, or get it back down.

Then the pump came into our lives. This tiny little device the size of a pager. And everything changed. No more trying to get a toddler to eat. Yeah, right . . .good luck with that. Our son could sleep on his own schedule; no more schedule dictated by needing to eat at a specific time because a certain long acting insulin was about to peak and cause a crash. We could manage his condition a little more discreetly in public (no more “shooting up” in public . . . sheesh, people!).

All along, our son took it like a trooper. I’ll never forget the day of his diagnosis. The day our lives forever changed, my two year old was skipping through the parking lot of the hospital toward the emergency room — with a blood sugar reading of 711 (as we found out later)! Those first toddler years, he thought of Type 1 diabetes as his “super power;” the thing that made him special and different. I remember telling him about Heaven and how one day Mommy wouldn’t have asthma anymore and he wouldn’t have diabetes, and he actually cried because he “would miss it.” We created Bravery Days to celebrate him for toughing out site changes and constant finger pokes. When we had interdisciplinary team meetings at endocrinology appointments, the mental health clinicians all said he was just the most well-adjusted kid they had ever seen. He mentored several friends and acquaintances through their own diagnoses.

He began taking ownership of his own condition as soon as he was able. At four, shortly after he started on the pump, his father and I let him start checking his own blood sugar (obviously under our close supervision). As he grew older, he began doing more of the talking at his endocrinology appointments. He changed the settings on his pump as his needs changed. And, and he participated in several clinical trials and studies that helped lead to many innovations and improvements in the technology we have now and other ancillary support devices.

Then, one year for our homeschooling, I asked him to begin blogging about his condition. He blogged and podcasted tips, tricks and just about being a kid living with the condition. He’s interviewed people in the field and athletes (but not Nick Jonas, yet, alas . . .). So, this year, his Junior year in high school, amidst all the many things he’s doing and the craziness of this time in his life, he transitioned from a regular insulin pump, to a Continuous Glucose Monitoring System (CGMS), and blogged about it. He offered tips and hints along the way, as well as his honest feedback about how it was. After many years of rarely complaining about his condition, this was a really rough transition. It interfered with sleep, and caused many disruptions. But he was committed to seeing it through and blogging about it, good or bad.

So for his honesty, for his courage in living out loud with this condition day in and day out, and for trying to help others who deal with this condition, I have nominated his blog Nikkobetes.com for an Eddie through Edublogs for Best Educational Use of a Social Network and I hope you will, too! Kudos to you, Nikko!

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