Sunday, January 29, 2012
Thought it would be good to record an update on how things are going, 2 months after diagnosis.
* Having a diabetic child has already become 'normal' for us. Its amazing how quickly routines get set, and how quickly God took the emotional roller coaster of those first few weeks and replaced it with peace and a sense of normalcy.
* He's been doing great. His levels have leveled off, and been great. He hasn't experienced a true low yet, or at least a symptomatic one. Actually, Friday his teacher called at lunchtime and reported that he BS level was at 45 when they did his regular check. He wasn't acting or feeling any different, but yikes, that's the lowest he's ever been. He was 57 that morning also. Must've just been a low day. Thankfully it did not cause me as much anxiety as I thought. And he was thrilled, because he got to partake in the 100 day cake and ice cream with no extra insulin shot.
*Mealtimes have become easier. We've begin to memorize carb counts in foods, and also have began to feel comfortable making estimates here and there, and even have gained a comfortability adjusting his insulin doses as we feel necessary.
* Two weeks ago he let a babysitter give him his bedtime shot. This was a big step! And this week? He started doing his own. How amazing is that?
We are so so thankful for all the support we've received, and for the fact that Aidan is such a great kid.
God is good, all the time.
Okay, last post of this series, finally. Just some random reflections from the whole experience that I wanted to jot down.
In the midst of the chaos, we felt so much gratitude. Gratitude that we caught it pretty early. Gratitude that it was nothing more serious. Gratitude that we had so much support from so many directions. Gratitude that diabetes research over the last few decades have incredibly improved diabetes care.
There were so many little 'hugs from God.
-Finding out his kindergarten teacher also has diabetes, and an encouraging text from her while we were in the ER. This text also informed us that the school nurse has a grown daughter with diabetes who was diagnosed at age 2. We are not only blessed to have a school nurse at all (the PDRC said many schools they work with don't), but one who has personal knowledge and experience with a diabetic kid! Those 2 things made the transition back to school SO much easier.
-Also, we've had several students over the years with diabetes. I can't tell you how many times my mind was drawn to thinking about them, and about how wonderful they were, and what normal lives they lead. This was huge! Also, the first night back at youth group, we had a first-time visitor. When Weston was sharing a little bit of Aidan's story with the group, she cheered at the word diabetes. Because she has it too. It's been neat to see how having diabetes is a little like a membership into a secret society. I received so many encouraging FB messages. Some were from people that I didn't even know had it, and many others pointing me towards other moms in our area who have diabetic kids. The JDRF has also been so pro-active. They sent a neat care kit, and made sure other moms called to check in on how we were doing.
-Here's another one: Aidan's buddy from school wanted Aidan to come over to play that Saturday after we got home. As I texted his mom back, I realized she hadn't heard about our ordeal yet. As I explained it, she was quick to inform me that her 15 year old stepson was diagnosed one month prior. Her family was going through the same thing! He lived in PA, but happened to be visiting that weekend. So when Aidan went over there to play, he got to meet a new cool older friend who has diabetes also, and who was super sweet bonding with him over it. (and he has since moved to Galesburg) Also, I feel so comfortable letting Aidan play over there! They know exactly how to handle things!
* Out of all our boys, Aidan is our best eater by far, and he isn't even crazy about sweets. This boy has been known to choose extra vegetables over dessert! And we have reflected on his age, 5, being so great for the time of diagnosis. He is old enough to understand a bit of our explanations, and to be reasoned with. Yet he is young enough to still trust us completely, and to not have a lot of anger about this major life change.
Overall, he has handled it so well. There have been moments of showing off getting shots and delighting in the extra attention, to moments of breaking down. The hardest part for us has been his meltdown/tantrums. Aidan has been a pretty easy kid since about age 3, but since his diagnosis he has had some super emotional meltdowns, usually in reaction to being told to do something he doesn't want to do. He began testing new boundaries. Some were directly related to approaching a shot, but most were unrelated. We finally decided that he just didn't have any emotional reserves left for dealing with the normal stressors of life. But it is SO hard to know how to parent him through these times. With a firm consistency, or erring toward more gentle indulgances as he is coming to grips with his harsh new reality. We've also wondered if maybe that is part of how he acts when his BS is a little high.
As for me, I was staying pretty stoic, because I think I had to in order to do what had to be done. I remember finally breaking down a few nights after we got home. The boys were in bed, and Weston had run to the store for groceries, and I was sitting on the couch and I just lost it, sobbing uncontrolably. I think it was the first time I'd really sat still all week, and I know it is normal to grieve some. I was grieving the loss of his completely carefree childhood, the loss of what we knew as 'normal', and embracing the fears for just how this could affect him in long-term.
My mind also did other crazy things, like fret over weird what if's. What if he was kidnapped? What if the government collapsed, and it was no longer possible to move to the wilderness and just live off the land? (I know, crazy) And what if he couldn't be a missionary to some remote tribe now? (This was silly once God assured me that of course He wouldn't allow him to have diabetes and then call him to do something that diabetes prohibited him from doing) Also, of course, we fretted over how this would affect us financially. Not only because of this hospital visit, and all the future doctor appointments and huge amount of perscriptions, but even with our normal grocery bill (needing to purchase more carb free items, prepackaged-easier-to-count carb items, and more fruits and veggies).
Then, at certain times new realizations/questions would hit me. How would this affect him driving some day? Could he ever live on his own?
My gut reaction was to hole up for a month, and read everything I could. Unfortunately, while I did this to a minimal extent, life must go on, especially when it's December. After a few weeks passed, I realized that I was already to the point where his diabetes wasn't the #1 thing on my mind 24/7.
Returning to school went super smoothly. He brought a book, called, "Taking Diabetes To School" that he shared with the class. His teacher and the school nurse were very intentional with how they wanted it to be embraced in the classroom. He does his BS checks and shots right there! The kids were fascinated to watch at first, but now it is just normal. I even had a friend comment this week that while she was subbing in his class recently, she observed some kids giving pretend insulin shots to a stuffed animal, because he was diabetic, you know. I love that Aidan being in their class will help them understand diabetes a bit, and to see kids who have it as normal. How powerful that would be if any of them ever get diagnosed!
Since I am there volunteering on Mondays anyway, now I just stay through his lunch and oversee his shot. The nurse handles it all the other days. (Took me a bit to grasp that his 'special need' comes with some extra rights, such as her changing her schedule to accomodate for that.)
His teacher has also commented, not that she would wish diabetes on anyone, but that out of her whole class, she would've chose him to be the one who could handle it best. He's responsible, intelligent, and emotionally consistent. She said it will be easy to recognize when he is 'off' because he is always so 'on', and that that is not true of most 5 year olds. :) That was a sweet way for her to share encouragement.