Friday, October 30, 2015

The Elephant in the Room

I remember it was a beautiful day, warm and sunny, the last days of summer. It was also the last day of life as we knew it. We were fearless and completely ignorant of what the next day would bring.

"Before" at Big Bone Lick State Park - the photo of a very sick (undiagnosed) little boy

And yet this year, it was a week before I realized that the two year anniversary had passed unnoticed. It's not that the elephant is no longer in the room. It surely is. It raises a loud trumpet every single day, sometimes moment, of our lives, but we've moved into a new stage of experience and the non-D part of our life has moved to the forefront.

I read posts by parents in online forums and you can smell the fear. I remember it. I remember thinking I gave the wrong dose, my hands shaking as I called the endocrinologist at 1 a.m. for reassurance on more than one occasion. I remember being so sleep deprived that I accidentally increased his basal insulin instead of decreasing it, causing his blood glucose to go even lower. I remember how I would feel ice water in my veins when I saw a number in the 50s.  I remember raw emotions that over-reacted.

William has asked me what I thought the day he was diagnosed. There was no fear. I didn't know enough. I knew enough to know the symptoms but not what life would become. I was in the stage of unconscious incompetence - I didn't know what I didn't know.

Maslow's Four Stages of Competence

Then, we got home from the hospital with our box of supplies and I realized - I don't know shit! I pledged to William that no one would work harder than I would to learn about this disease, but my reading and study, though necessary, highlighted my Conscious Incompetence: I knew what I needed to know and do but not enough experience to handle it. Fear kept me from making, as Scott Benner puts it, "bold" decisions. In fact, at first, I was mad at Scott for advocating to be bold with insulin (another blog post coming) through his podcast. But, he was right.

What makes this disease so hard is that the only way to rid myself of fear was to take risks, to make mistakes and forgive William and myself for them, to be bold, to work hard. Experience will move one to Conscious Competence: diabetes will never get better but you'll get better at managing it. There are days when we dip in and out of Unconscious Competence, where moving through our day we add temporary basals on the fly, throw in a unit or two of insulin, oops too much here's juice, "okay, whatever". (Double arrows down still give me a heart attack so I'm not a ninja yet.) It feels a lot like flying, diving, dipping, taking currents around obstacles. But don't for a second congratulate me. I can't ever turn my back on that elephant. Although humans have sometimes learned to manage them in captivity, they've been known to kill.

Disclaimer: This blog is about our love of learning, and more recently, also about my son's diagnosis and life with Type 1 Diabetes. It is in no way intended as advice, medical or otherwise. Consult your own doctor if you have questions about your medical care.


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