Dear Dr. Jen and the rest of the amazing staff at Jess's diabetes camp:
After years of us encouraging her, Jess suddenly announced less than 3 months ago that she was going to diabetes camp this year.
I had gotten used to the idea of her not going. It had almost turned into a joke, where we would ask her if she wanted to go to diabetes camp this summer just to hear her screams of protest that she absolutely would not. "Friends For Life" is my diabetes camp she would yell. And, we had to agree...Friends For Life is absolutely amazing.
But, then she decided to go.
And, I was scared shitless. There has not been a single hour in over 5 years that I haven't had thoughts of her diabetes, or been aware of her numbers. For as much as I love Dexcom Share, I now know if she is high or low at school, whereas before I wouldn't hear about it until she got home. It makes the diabetes even more constant. On a recent first time getaway weekend since diagnosis, her dad and I still followed along giving advice as we watched the Dexcom share. It was wonderful to finally get away, but I still woke in the middle of the night to check the dexcom.
And, I don't mean to wake. But, like many parents I am terrified of nighttime. I know "dead in bed" is incredibly rare. But, I do not know how I would survive if it occurred. And, knowing that more than once we have found our sweet girl covered in sweat with a blood sugar of 42 terrifies us. So, I don't know that I ever sleep soundly...always listening for the alarm, just as when they were babies I listened for their cry.
So I was terrified to turn over her care to someone else. Would they watch her like I do at night? Would they keep her safe? She can 100% care for herself during the day, and I am thankful and proud at how much she is able to self-manage. I don't worry about her at school, or with sitters. But, at night as she peacefully sleeps she cannot protect herself. I am assured by her endocrinologist that there will come a time when she will wake from lows. But, it has only happened one time so far.
So, as the drop off day approached, I was filled with nerves.
But, then I met with you, Dr. Jen. I know you are not an endocrinologist. You had never seen a dexcom. There is an endocrinologist at camp the whole time, but every cabin also has a physician of some specialty or another who sleeps with the children. And, Jessica's cabin, like the others, not only had a physician but also 4 counselors and a dietician. And, you are the physician who would sleep in the bed across from Jess.
You were kind. So kind. You listened carefully to our fears regarding nighttime lows...taking careful notes. You listed to the explanation carefully of what to do if the dexcom alarmed and how to calibrate it. You nodded understandably when I told you we had changed her nighttime settings so that a bolus wouldn't be given if she was under 160 (as opposed to 120 which is what we do at home.) You made both myself and her dad completely at ease.
And, so we left her. And, I felt a weight lift. Her dad said to me after 24 hours "I normally feel like I am under water, but now feel as though I am swimming with my head above." We both guiltily talked to each other about how we hadn't realized how much work went into managing Jess's diabetes until we had 24 hours without knowing anything about her care. We were grateful no phones or communication are allowed. We talked about how thankful we were for sleep....wonderful, deep sleep. We talked about how ridiculous it was that her cabin of 10 girls had 4 counselors, a dietician, and a physician and yet parents are normally completely on their own in caring for their child. We talked about how we both feel that parents of kids with chronic diseases need more support. We tried not to think jealously of parents with healthy kids who don't know the burden we and others live with. We tried not to feel guilty that we are enjoying this break, and worried that others will judge us for admitting it.
But, we also talked about how we wouldn't trade Jessica for the world. How we would gladly care for her forever, and hate the burden she will live with. And, we reminded ourselves of the beautiful people her T1D has led us to.
So, Dear Dr. Jen...thank you for giving us our first real break in over 5 years. Our work week has been crazy and yet it has still felt like a complete break. We are forever grateful. We know Jess is safe. And, we suspect she is having the time of her life among so many other broken pancreases. Because, as she often tells us, neither myself nor her dad knows what it is like to be a kid with diabetes (her dad was diagnosed at almost 18.) We hope in some ways it feels like a break for her too. We know how much she hates feeling different all the time.
So, please continue to keep her safe for the next 48 hours. We can't wait to see her and hear about her adventures.
And, Dr. Jen and all the staff...thank you for choosing to do this with a week of your summer. I'm pretty darn certain this may all be volunteer work. You are giving many tired parents the most amazing gift. God bless you all.
P.S. Next summer we are going to be smart and take some vacation days while she is at diabetes camp!