I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.
And, of course, it is by no means meant to offer medical advice.
Friday, May 18, 2012
The Death of a Pancreas
Our journey with Jessica's diabetes has been unusual compared to some. Her diagnosis, while emotionally devastating, was physically easier than others. We were INCREDIBLY blessed that she was not sick at diagnosis---just simply thirsty. She will forever tell everyone that she "got diabetes in a McDonald's parking lot on the way to Shenandoah." I have often had some form of survivor's guilt as I have listened to others tell their diagnosis day stories. I realize how lucky we are in this regard, and knowing what we went through those first few months simply cannot imagine what others have gone through. Jess was on incredibly small doses of insulin for months. She used to take 1/2 unit of Lantus a day, and 1/2 unit of Novolog with meals. They thought perhaps she had MODY (a cluster of genetic forms some of which only require oral meds). She never had positive islet cell antibodies (a hallmark in Type 1). She never had ketones---not even at diagnosis when we found that the "critical high" on her meter was actually a blood sugar of 684. This gave me hope. So many of the potential areas of research are focused on stopping the body's attack on the pancreas and allowing the beta cells to regenerate. We were different I assured myself early on. Jess would continue to make insulin as demonstrated by her extremely low insulin requirements and lack of ketones. That cure might come. Maybe I needed this early on. I definitely wasn't fully ready to accept that this was it. This was how it was going to be. My "perfect" little girl surely could not be un-repairably flawed. I needed hope to survive that first year. Even though I continued to live in denial and tell myself that Jess's pancreas was only sick not dead, we did as we were told. We checked ketones with two unexplained highs on the pump. They were always negative. Of course they were I told myself. Her pancreas is still chugging along, just on a slower track than normal. But, of course, her rates climbed as the honeymoon ended. And, I healed. We all did. Diabetes moved to the back burner, instead of suffocating us with its glaring fire. Until one night the pump was forgotten by the bathroom sink. It was then we were given a true glimpse as to the well being of Jessica's pancreas. She awoke nauseated and having to pee...and, the ketone meter declared her pancreas's death. Large ketones. A working, living pancreas does not allow large ketones to be made. I paused as hope shattered. But, the pain I expected wasn't there. A bit of an ouch perhaps, but not the deep heart wrenching pain I had anticipated. Time had shown me that I still have my "perfect" little girl. Only she's not as little. She's bigger, stronger, more resilient, and simply my hero. And, although I would give anything to revive her pancreas she's absolutely "perfect" without it.