Sarah on her way to Diabetes Summer Camp last June
(I've been working on this off and on for a couple of weeks in my "spare" time. I know it's long, but I needed to journal some of my reflections as the anniversary of her diabetes is this month.)
About 2 years ago, my daughter was diagnosed with type 1 diabetes. I don't know the exact date, only that it was in the middle of March, right around St. Patrick's day. I guess I don't remember because it was such a blur. We (we meaning Lily, Sarah, and I) went to the doctor that afternoon because I thought she had a UTI. In what I thought was an unrelated issue, I also wanted to ask the doc why she would be throwing up with no other symptoms. Turns out it was oh-so-related. The culture came out negative for a UTI, so the doctor decided to test for ketones. Of course, in those days I didn't know what ketones were. (The acid made by the body from breaking down fat when sugar cannot be used for energy, i.e. not enough insulin in the body, just in case you didn't know either.) She tested for moderate ketones, which is why she was throwing up, (ketones first spill over through the kidneys into the urine, and then the body tries to flush them out, which is why a symptom of diabetes is extreme thirst and frequent trips to the potty. If there are too many ketotones to flush, ketoacidosis sets in, and the vommiting starts. Eventually, (as quickly as 8-10 hours) you end up in a diabetic coma. We have never been there, thank goodness!) and the pediatrition came back and said we were looking at type 1 diabetes. I thought there was more testing to be done. She sent us to the pediatric diabetes specialist, who happened to be just about leaving for the day. I filled out some paperwork, and called Dale at work. I didn't really know how to answer him when he said, "so how do we know if she really has it?" because I didn't know that we already knew she did! It is really that easy. A blood sugar above normal (180) or the presense of ketones is all it takes. He left work early, picked up the other kids at school and met us at the clinic.
Four hours later, we left the specialty clinic, after learning how to check blood sugar, give an insulin shot, count carbs, treat low blood sugar, symptoms of high blood sugar...and strict instructions for no juice or sugary pop, unless for a low blood sugar.
Then we had to go to the pharamacy. Remember that Lily is 2. She's been at the doctor for 5 hours now, with no snacks. It was supposed to be a 30 minute appointment. I was a few months pregnant. We were searching the seats in the van for stale pretzels at this point! Fortunately, we were headed to Wal-Mart, where I grabbed a box of Teddy Grahams and started chowing down with my toddler. The toddler was shrieking by now. I will never forget a middle-aged woman GLARING at us on the way to the pharmacy. I was so frayed at that point that I snapped at her, "She's FINE!" The lady sniped back, "She doesn't seem FINE to me!" as she passed me in a huff. I resisted the urge to tell her exactly what my day was like and pushed the cart vigorously to the pharmacy, where Dale was ahead of me with 2 more kids standing in line, leaving me to squint at such things on the shelf as, "glucose tabs" and "One Touch Ultra" moniters. I couldn't get Patti Labelle's diabetes commercial out of my head:
"One Touch Touches Everything!"
Remember that one? Course, over the next few months every old man and woman on TV was yapping about home delivery and Medicaid, and "Test your blood sugar. Check it often." Anyway.
After Wal-Mart, we headed to Pizza Hut. It was about 8:00 by now. Sarah was excited to test her blood sugar, and we looked up the carbs and everything, didn't order soda, ate dinner, informed her she would no longer have to fast (at which she got a very worried and devestated look on her face and almost started crying. We hurriedly explained that Heavenly Father understands and that she could fast in spirit, blah blah blah. We, of course, as adults who have fasted for years looked at it as a silver lining. She, who had only been "eligible" to fast for two months was devestated to not follow the commandments! It's all about perspective...)
By the time we got home, it was way late. Sarah was sitting on our bed, cheerfully unzipping her kit to pull out her monitor to check her blood sugar before bed. "And just think, Mom, after I'm done with diabetes, I can use this cute bag for something else!" It broke my heart to have to tell her, "Honey, you'll never get over diabetes."
"Ever?"
"Ever. I'm so sorry." She wiped the tears from her eyes and checked her blood sugar and trotted off to bed.
How many more times will she have to wipe the tears from her eyes, check her blood sugar, and trot off to bed? Too many. Diabetes doesn't EVER go away for her. It's a part of who she is, it's in her blood. Everything she does has the "how will this effect my diabetes?" question attached.
But I'm proud of her. 2 years later, she is pumping with great sucess. She carefully weighs all her food. She is a professional carb-counter. She can eloquently explain the difference between type 1 and type 2. She can politely dispute an adult who thinks she's not allowed to have a cookie with the rest of the class. She's doing a science fair project on blood sugar in people without diabetes, and how sugar impacts the blood glucose levels.
And that toddler who is "FINE."? She knows the symptoms of low blood sugar, how to treat it, and what number qualifies her sister to have juice. She knows about insulin, glucometors, test strips, ketones, and high blood sugar. She gives her stuffed animals shots because they have "Type 1 diabetes and they just had carbs, so they needs their shot of insulin because they do not have a pump yet." Here's hoping that she never has to do it for real. (1 in 6 chance of having a sibling with diabetes. I have five kids. You do the math.)
I, in the meantime, get therapy from blogging and yelling at the computer screen before writing a more tactful email when things aren't going right at school and I have to advocate for her once again. I wipe the tears from my eyes as I make her test her blood sugar before she trots off to bed, knowing that if her numbers aren't good, it's ultimately my responsibility. I work to control my tongue (never ending process) to not snap at the people who are her health care providers, teachers, volunteers, nosy neighbors, etc. who only have her best interest at heart. I pray that none of my other children have to deal with this (EVER), and wish that could take this from her.
But I can't. There is nothing we can do about it, except hope for a cure, wipe the tears, and check the blood sugar before we trot off to bed.
Did you hear about Lance Mackey in the Iditarod? He got into Nome yesterday at 11:38 am, almost 9 hours ahead of the second musher in. This is his third consecutive win. The man and his team are on fire! Logan is way into it. He informed me that they have a "Junior Iditarod" every year. I said yep, too bad we don't have a sled dog team, huh? He was rooting for Mackey again this year.
