Saturday, January 12, 2013

Why We Do This Part I

The thing about diabetes is it changes your life completely and forever. In the time it took the doctor to say "diabetes," Ken and I went from being parents to a pancreas. We carry the weight of our daughter's survival on our shoulders every hour of every day.

Toward the end of the summer of 2008, Charlotte started showing signs of the disease. It started with a persistent diaper rash, progressing to an increase in thirst and wet diapers. Eventually, she was vomiting sporadically. By the day of her diagnosis, she was exhaling like she had run a marathon. What we didn't know then was that all of these symptoms came from her body trying to get the excess sugar out of her body. When my mom called to tell me that she had passed out after a bath, we took her to the ER. It was August 30 ... Charlotte was 20-moths-old.

The triage nurse smelled a fruity smell on her breath, and it is all a blur from there. I remember three things very clearly. First, her blood sugar was so high that their meters couldn't read it. They had to draw blood to get a reading. The acceptable high is 120, and Charlotte was at 713. Second, the nurses had a terrible time starting an IV because Charlotte was so dehydrated. It was torture. Third, we were at a hospital with no pediatric unit, and I naively thought we would drive her to Cook Children's. The doctor gently explained that she was too sick and needed to be monitored, so an ambulance came to get her. They called it a Teddy Bear Transport. It was still  an ambulance.

Charlotte spent just under 24 hours in the ICU with an IV giving her insulin. Once they moved her to a room, we had to learn how to give her insulin injections. We adopted a hug-and-pin method to hold her still because she would thrash and scream and beg us not to. Everyday the doctor and Certified Diabetes Educator would come by and give us a little more information and teach us a little more about being a pancreas.

After five days, they sent us home. Coming home with a diabetic is kind of like coming home with a newborn for the first time. You leave the hospital, go home, and just kind of stand there thinking, "Well, now what do we do?" When  you left for the ER, everything was different, everything was normal. Now you have a new routine, you are up several times every night monitoring blood sugar, and you don't trust anyone else to watch her and keep her safe, so you don't go out a lot.

It has been just over four years since our lives changed. While, sadly, diabetes has become "normal" for us, it's still hard. We will never stop worrying about her, but we have to balance that worry with allowing her to be a kid. It is exhausting to always be counting carbs and checking blood sugar. It is exhausting to get up in the middle of the night to check her. It is a time-suck of epic proportions, and there are days when I look into the future and see nothing but diabetes and cry at the endlessness of it all.

But thanks to new technologies and new ways of treating the disease, Charlotte is living a healthy, almost normal life, going to public school, playing with friends, and spending the night with her grandparents. These technologies and treatments were found in part because of the funding the Juvenile Diabetes Research Foundation gives to diabetes research. Because of the work they are doing, we raise funds for JDRF through a team. Charlotte's Angels was established by my friend, Aaryn Lamb, within days of Charlotte's diagnosis. The Stop the Shots Craft Show came into being as another way to fund-raise for JDRF, and it was conceived after my college roommate's son, Grayson, was also diagnosed with diabetes.

But that's a story for Part II...

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