We are in our fourth year of living with our uninvited guest-type 1 diabetes. We talk about diabetes alot…all and everywhere…in an effort to get people who do not live with diabetes to understand…and we hope that through public understanding will come an easier life for people who do live with this disease and a ‘heads up’ that diabetes could be YOU or YOURS at the next turn of life’s page.We are most likely-annoying about it–so here is a disclaimer–we are going to keep being annoying about it–no apologies–because now we know- what we didn’t know 4 years ago–and we want to make sure YOU know too–just in case.
In June of 2010 we were celebrating Frankie’s graduation from Kindergarten and gearing up for that amazing journey to come–full day school! Happy, carefree times! At the end of June Frankie came down with the coxsackie virus-no biggie right?--just a few days of illness and back up on his feet.(or so we thought) Then came July-where Frankie grew a few inches and lost a few pounds. As parents we looked at him and saw a baby turning into a boy-losing his baby fat, growing, and looking just like his Dad at that age. Six years old- taller than most and lanky. By the end of July Frankie was changing-didn’t want to swim, play outside, or even have friends over. “Oh my,” we said, “are you getting worried about full day school?” and we talked to him about how awesome it would be to go to school all day. We used to go for a walk every night back then–Mom and the kids–our bonding time. Frankie stopped wanting to go and we said “Now c’mon, you are six, get your sneakers on–you can’t stay in the house all day!” (Insert HUGE guilt here! ) Days rolled by and then August! Frankie started drinking water like it was going to be outlawed at any minute, and using the bathroom–and using the bathroom—and using the bathroom—you get the idea. These are all warning signs of Type 1 diabetes-but we did not know. The medical community is unsure what exactly triggers the autoimmune disease Type 1 Diabetes. They are not sure what causes a persons immune system to attack the beta cells of the pancreas and shut down insulin production, but they believe it can be triggered by a virus- like coxsackie.
August 22, 2010. Our annual family clambake. Both sides of the family for a day of fun, laughter, and clams. The family rolls in- each one saying the same thing–“My he is soooooo skinny!” “Give that boy a sandwich!” and “hey, why don’t you feed your kid anymore?” By mid day I wanted ALL family the hell out of my house! I didn’t see it–I just saw my boy–sitting alone in his room with his legos–looking so sad—but I didn’t see illness–didn’t see DISEASE. (Insert more guilt here!)
August 23, 2010–that day a horrible memory – the day that changed all our lives forever. Frankie woke up in the morning vomiting- a gross brownish black substance, holding his head in pain, and saying his whole body hurt. A rush to our local urgent care, where I work–thinking the whole ride over–I bet he has Lyme disease. First up–a Doctor on his very first day at the practice. He takes a look at Frankie, looks at me and quickly says “I’m going to get Dr. C.” (the owner & my boss) I thought to myself–this can’t be a good sign…and in comes my boss. I knew, just by the look on his face–this was bad. In the kindest of ways Dr C. broke the news…”this is type 1 diabetes.”
In truth, I don’t remember most of what happened after that as we got on the roller coaster called life with Type 1 Diabetes. What I do recall are doctor visits, classes on how to keep Frankie alive and more doctors visits. I remember lots, and lots of blood draws, and being told to feed him, as much as he wanted to eat–and in the next sentence being told about 40 carbs per meal, ‘unlimited’ snacks (snacks with no carbs), how to dose insulin and juice boxes for an emergency. I can hear the doctor talking about the many ways this can kill him and in the same breath telling us “we can do this.” In my head I can see us- practicing giving shots on each other–Mike and I–injecting saline into each others arms, and I remember crying, crying, crying. I remember Frankie’s face- sitting on Mike’s lap–when the reality of this disease, and his ever after life with it–finally hit him like a ton of bricks. I remember the sound of my husband crying in the middle of the night when he thought no one could hear- after being so strong though all the crazy, for the rest of us. I can see Rachel’s big blue eyes, filling with tears, so scared, when we dropped her off at Grandma’s to head to the Joslin Diabetes Center. What I can’t remember is how we got through those first weeks, and how we mustered up the courage to put him on the school bus 2 weeks after diagnosis- instead of wrapping him in the cocoon called ‘staying home forever and ever where I can watch you like a hawk.’
I’ve written about the rest- taking diabetes to school and the problems with that, the unsolicited advice of strangers, the bad jokes, and horrible stories of blindness and amputations told to my son. Those early years when we weren’t so strong, but we were determined.
I see now, 4 years in, the brilliance of a little better than average report card being brought home by a boy who gets to school late sometimes, misses school altogether sometimes, and feels rotten a lot of times and still plugs through his day. A boy who manages his diabetes in school with just a cell phone and self confidence.The patience of a girl, who often has to ‘wait for diabetes’, miss school herself, miss parties, cancel sleepovers and does all this without complaint. A girl who tries out for soccer, plays the clarinet, enjoys time with family and friends-but would drop it all in a heartbeat for her brother.
In 4 years I have seen progress. A school district that didn’t understand how serious this disease is–every minute of every day–4 years ago–now provides diabetes education to their staff and have written policy to provide for glucagon injections in case of emergency to keep children with diabetes safe at school. A town, recognizing that diabetes is a misunderstood disease and myths about it are everywhere, trying to change that–one blue light and one blue ribbon at a time.
In these 4 years we have felt the love of family and friends–who can’t take this away for us–but they want to…and with every hug, and act of kindness–they make this life with D easier.
The T1D ride is long and winding, torturous and maddening–but in it–is exhilaration at seeing the SUPERHEROS that are our kids-Rachel and Frankie–taking diabetes by storm and dragging the rest of their town onto the roller coaster with them.
We hope diabetes never hits for any of your families–but we hope–if it does–you know the warning signs because you asked about that blue light, that blue ribbon, or we annoyed you with all our diabetes talk.
We hope…if diabetes hits…you will be ready.