At the age of six, my son J was diagnosed with sudden onset Type 1 diabetes. He went from having no symptoms of diabetes, to DKA within 48 hours. We had just traveled from Las Vegas to New Jersey to visit family. Later that night after the flight, J was thirsty. It was a thirst that could not be quenched. Then twelve hours later came vomiting and stomach pain. We all assumed he had a bug from the flight. When I went to wake him up the next morning, I knew it was no little stomach bug. J’s speech was slurred, and he could not stand on his own. I wrapped his body in a blanket, called 911 and we were rushed to the ER. It took the ER nurse 10 seconds flat to smell his breath, recognize the fruity odor of ketones, and say, “Well, he is diabetic, isn’t he?” At that moment, our whole world came crashing down.
We spent a week with J in ICU, and in training. We were taught how to give shots, check blood sugars, count carbs, and everything else that we needed to know. We were told he could still be a normal kid, and it was just a matter of time before we would all adjust. In time, we did get better. We adjusted. We learned. We navigated. But we were never truly confident. My hands shook every time I gave J a shot, or checked his blood sugar. We didn’t really know about complications and the ramifications of lows, and what DIB (dead in bed) was, or how easily things can go bad.
We just went about our day, checking blood sugar, counting carbs, and injecting insulin, without truly understanding what we were dealing with. I didn’t know that I wanted my child’s A1c to be under 7% or that I needed to check blood sugars in the middle of the night, or that I would need a 504 plan to ensure he was treated fairly.
Everything changed when I found the Diabetes Online Community (DOC) in 2009 via Twitter. I started to tweet about J’s day, and blood glucose levels, and found that others did the same. There was a community of people out there, just like us, that understood what we were going through. I was able to start asking questions, learn about post-prandial spikes, insulin pumps, CGMs, ketones, and so much more. After almost two years of my child living with Type 1 diabetes, I felt like I was being educated for the first time. I am thankful everyday for that first retweet I got, which led me to find my second family and my place in the amazing DOC.
We’ve sometimes felt isolated, like we don’t belong in the world of “normal” families. Being able to turn to another parent of a child with diabetes, or an adult with diabetes and hear “me too” was life changing. I slowly came out of my diabetes shell, and gained both more confidence, and knowledge.
When J first started his pump, all I heard from the doctors and reps was how amazing it is, and how much freedom J would have. No one warned me the mishaps that can occur with insulin pumps. I found out the hard way.
One day, J’s sugar wouldn’t come down, and his ketones were climbing. I didn’t know what to do. We had just gone swimming, and since I’d been told to take his pump off because J wouldn’t need insulin for swimming, that’s what I’d done.
Feeling angry and scared, I went to Twitter. I was ready to throw the pump in a drawer and go back to injections. Then minutes after my Twitter rant, one of my followers called me. She explained that not all kids can be without insulin for a long period, even if active. She told me about using blood ketone strips instead of urine. Most of all, and what changed me forever, was when she said, “You got this. I’m here and we will fix it together.” We did.
At that moment the cloud of despair, the feeling of loneliness, and the panic, were gone.
Later, the same friend saved me a second time when the emotional toll of taking care of a child with diabetes was weighing me down. I was a on a ledge. I felt like giving up, like quitting not just the pump, but ever trying anything new or learning anymore.
She didn’t let me, and guess what? I am now that someone for another newly diagnosed family out there. I am now able to be that beacon of hope for someone else.
I don’t panic anymore when there’s an unexplained high. I am able to tackle breakfast spikes with confidence, schedule basal testing, and demand fair and equal treatment for my son in school, all while keeping him safe. I am training new families on 504s. I’m able to give back, all that I got when I was first starting out.
If it weren’t for that one tweet in April of 2009, I might still be lost. More importantly, I wouldn’t be able to do the work I do to help others. The Diabetes Online Community is always there for me, whether it’s a question about something we never encountered before, a virtual hug or high five.
312 weeks. 2190 days. 52,560 hours. 3,153,600 minutes. Six years: that is how long my child has lived with Type 1 diabetes. That is how long we have pricked his fingers, pierced his skin, watched and cared for him as he experienced ravaging highs and debilitating lows.
That is how long my family has been doing its part in making life better for people with diabetes. That is how long we’ve been waiting for a cure.
Alexis Newell is the mother of two sons. Her oldest J was diagnosed with Type 1 diabetes in 2008. Her grandmother has LADA (Type 1.5), and her husband and father have Type 2 diabetes. Alexis volunteers for her local JDRF, currently serving as the Outreach Mentor Chair. She writes the diabetes blog: Justicesmisbehavingpancreas.blogspot.com.