But, then she grew up. She decided that, for now, she doesn't want to display her diabetes. This doesn't mean she will always feel this way. And, it is certainly not how we have "raised her." But, I respect her decision. And, if I were starting middle school again I think I would probably make the same one. It is so hard to be different during these tumultuous years. And, she feels this way only at school. At JDRF events, out in the public, on vacation...she displays her diabetes proudly. But, within the walls of the school she feels safer not putting her diabetes on display.
And, thus the battle of the tubing began. She tried every possible way to hide the pump. Spibelts showed underneath shirts. Pump bands did too. Skinny jeans were popular. It was a daily fashion battle.
I suggested the Omnipod. I had originally gotten her a demo three years ago, thinking it would be the least intrusive pump. She had left the demo on less than ten seconds before ripping it off and throwing it on the soccer field. But, the new version is smaller, and she is bigger.
At first she was resistant, but long story short, she decided to give it a go for 1 month. We had our ups and downs. It's not perfect. On vacation it let out a high pitched alarm that wouldn't stop in the middle of the packed swimming pool. She was horrified. I thought that would be the end of the Omnipod, but she kept wearing it. Their customer service isn't Animas, and I wasn't impressed with their tech support. We miss the remote. And, HAVING to change it every three days (it alarms if you don't) is a bit of a pain. But, from a medical perspective she seems to have better insulin delivery and way less kinked site problems. And, she can wear whatever shirt she wants. And, so she has decided to stay on it. And, her dad decided to switch too.
We are so lucky. At a recent JDRF event I sat by the grandmother of a child about Jess's age with Type 1---diagnosed about the same length of time. Sean got out his Dexcom and I saw her glance. She had never seen one. I showed her all the features, told her how much it has helped us. She called her daughter over (the mom of her T1D granddaughter.) She, too, had never seen one. They were amazed by the technology. Jess and Sean have had it for 4 years. It is not new technology. I completely respect people who do not want the technology. But, to have never been offered it, I find that unacceptable.
It is hard to believe I am now the mom to a T1D middle schooler. It is so different than elementary school. Gone is the support from the teachers in terms of reminding her to check before tests. We have had so much frustration with her 504 that we have all just given up for now. The school will "allow" her to check and delay tests if she is high, but Jess (at age 11) must do it all on her own. Even with standardized tests, no one will prompt her to check and defer the test if she is not in goal. It has been exasperating, but the school won't budge. It is amazing that within the same district, in elementary school the teachers were so involved, and would allow her to write her blood sugar on the corner of the test so there was transparency. In middle school they consider it a "medical issue" so the teachers cannot be involved at all. Jess must decide to check and then pull out the nurse's pass if she is not in goal. Of course she doesn't do this. That would draw attention...the very thing she is trying so hard to avoid. If we hadn't had such an absolutely phenomenal elementary school experience with nurturing teachers and incredible principal it wouldn't be so hard. But the contrast has been very difficult.
I will forever remember the lecture I went to at CWD where they talked about children processing diabetes. When adults are diagnosed with a chronic disease they process it and move on. For children, every new developmental stage means re-processing and figuring out how it fits into their life. What having diabetes meant to Jessica at age 7 is very different than what it means to her now at age 11. I remain so proud of her. She doesn't check or pre-bolus as often as I wish she did. But her HgbA1c's have been excellent. She wears her pump and her Dexcom. I have changed my expectations...taking insulin and wearing the Dexcom to me are non-negotiable. I don't care how she takes her insulin (she has decided to remain on a pump) and I won't nag her to check her blood sugar as long as she wears the Dexcom. I think we are still in a good place.
At the recent gala, we heard the heart-wrenching story of a mom whose beautiful daughter was recently diagnosed. I so remember the raw pain of those days. We have come so far. I hate that Jess has this. But she is living well with it. Life is so much better than back then. She has handled this unchosen road with such grace and strength. And, that is the biggest thing that has made it easier for me. Like other T1D children she is a hero...they all are.