05 April 2012

Misty Eyed Muse

     Last night I was up more than half of the night. I'd slept through an  alarm and woke at 2:30, angry at myself for oversleeping the first night alarm by an hour. I tested and found N's glucose level at 59. It was nearly impossible to wake her and get her to drink juice - scary in an of itself. I waited the requisite 15 minutes, retested, and she was still low so we retreated. We repeated this process over the next 90+ minutes. Juice, chocolate milk, more juice... I'm surprised she doesn't vomit on me when this happens. Each time she would go back to sleep, while I tried to keep my eyes open with facebook and cleaning - never moving far from her side. Finally, at 4:30 we got a reading of 111, and while lower than I'd like for a night time reading, acceptable considering my realization that wake up time was only 2 hours away. Of course, I slept through that, waking the kids with 20 minutes to ready themselves for the day.
     This could not have occurred on a worse day. It's only our second day back from Spring Break. Yesterday the kids arrived late because we had to change the insertion site for her pump. It had started peeling off, crazy since we'd just hooked Miss N up to the replacement pump we received the day before. She finished it off by day's end accidentally ripping the site out with her arm tangled  in tubing. The day before that, the original pump failed to record a bolus but clearly gave that insulin and more. Miss N kept dropping low, then lower, and still lower until I called it in.
     Meanwhile, Brother Bear appears sullen, angry, left out, unhappy. He routinely caves himself in his room, expressing distaste for the healthy food varieties that adorn our plates and trigger sensory overload nightmares for his taste buds. I know, internally, that it's normal for him to resent the time suck D represents in our lives at the moment, and even though it won't always be that way, right now (for whatever reason) it is. Yes saline start and pump start consumed spring break. Yes, 26 lows in four days is a lot, and it's not fair that activities were rescheduled then ultimately cancelled due to the perseverance of low blood sugars and potential for more if we'd gone through with our plans.
     It's understandable. That doesn't make being raged at bearable. It doesn't make him feel any better, and more often than not, it makes her feel worse. As if her brother blames her and not this disease.
     I want to rage at the world, scream out loud that I hate diabetes. Four, five months ago, it wasn't this hard, but since then she's been growing, maturing. I hit my sleep deprivation limit, and simultaneously hit the bottom of my wallet. I'm not the first parent to lose a job when my kids were sick or injured, and I'm certainly not going to be the last D Momma to lose her job, only to later think it's the best that could have happened at the time. All I know right now is that I want to scream, cry, take a break, and then reality hits me - some day, I can do just that. But not Miss N, not anyone with type one.
     I know what we need to help us through this difficult time. I just don't know how to make it happen. Not any of it. I need sleep (good luck with that.) We need the CGM (we halted at 46% two weeks ago an haven't budged since.) I need a new outlook, perspective, attitude - whatever you want to call it. (That's the hardest, yet. This disease can take my daughter's life in a heartbeat - just one really low low, combined with me sleeping through that stupid alarm, and she's gone. For some, it seems a remote possibility, but with all her night time lows that do not wake her up? I can't live with that. (Note to endos, not that they're reading or ever will read this - pleases stop telling us new parents that night time lows will wake our children - they do not!)
     Yes, I need to build a new perspective. I want to celebrate all that my children are and have overcome. They are truly amazing, inspiring, incredible young adults in training. I love them with all of my heart, and my heart aches over all the hurt that fills our home today. But I can't scream - the torrent held back by the choke hold on my throat won't allow it. So I move forward, act as if, misty eyed.
  The muse of inspiration, always at my side, once again helps me process and begin the work of letting go. Perhaps sleep will reset this poor outlook. Oh, and a muse of fundraising - I could use her too.

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