I've been reminded of an important lesson this month. Take the Bird's Eye View.
After a long period of absolutely amazing blood sugars, this past month brought numbers more out of control than I have ever seen. None of our tricks worked. We increased her insulin by insane amounts and still she remained high. I experienced frustration unlike any I have known, and a sense of helplessness for the first time since her diagnosis. I finally called her amazing health care provider, who of course was...you guessed it....amazing. Her first question was "what's going on over there?" She, too, was surprised by how much Jess's insulin requirement had jumped. Her theory was a combination of growth and that the honeymoon was definitely over (the period of time when Jess still makes some insulin on her own, before complete pancreatic death). I had actually thought that this had happened awhile ago, but based on all the equations of insulin needs, etc it seems to have now happened. Luckily, I already mourned this so there was actually zero emotional impact of her stating it. And, I was so incredibly relieved to have someone else help out. My confidence was shot, I was emotionally and physically drained, and I needed help. Not something at all easy for me to ask for, but I am getting better at it as life goes on.
Jess's healthcare provider made suggestions, and was available all weekend to help (she is truly hands down the best). Things are still not what they were a couple of months ago (and she's been sick this week which of course does not help!), but they are leveling out some.
But, all of the above is really just boring background. I realized this past month that I forgot a very important lesson. Even though diabetes requires so much of our time and energy, especially when it is completely out of control, we can not let it become our sole focus. I spent too much of this past month frustrated and upset. There were too many times I forgot to look past all the high numbers on the meter and see the beautiful little girl in front of me. I worried too much about the high sugars coating her vessels, and forgot to focus on the here and now. The tragic, absolutely devastating events of last week in Connecticut are a deeply painful reminder that none of us truly knows how long we have. And, although blood sugar control is important both to prevent short and long term complications, it is perhaps just as important to also focus on the here and now.
I realized this one night while sitting in amazing front row seats at the symphony. Jess is an avid piano player and had the perfect view of the guest pianist's hands. The absolute joy on her face throughout the evening was palpable. Her blood sugar was cruising along in the 300's and yet she clearly was experiencing true and pure joy. I couldn't help but sit with a crazy grin on my face the entire performance.
Although so easy to forget so much of the time, diabetes is but one facet of my beautiful, amazing daughter. And, when it decides to revolt and cause deep turmoil, I need to remember to take the Bird's Eye View. These high numbers will pass, but so will time. And, I will never get that time back. Jess will never again be 10 years and 4 months old.
So, perhaps what I have learned this past month is that there are many sneaky ways diabetes can win. We very carefully don't let it stop Jess from doing anything. We make sure she is as unaffected as possible by these rough times. But, she and we need more than that. We need to remember to focus on the great big wonderful enormity of Jessica, even when part of her decides to create havoc.