It was two years ago this month that we were told Brandi needed a pancreas transplant to survive. Two years ago that we were told she would probably only survive another two years without one.
I immediatelely set off to find the doctor and see if this was it... if her body was shutting down because we were officially out of time, panic clawing at my gut and tears filling my eyes. I wasn't ready, we couldn't be out of time, we just celebrated a year of no hospitalizations...
It was my fault, I got too lax, I got too cocky, I had to make a big deal out of the anniversary and this was Fate's way of smacking me down, putting me in my place. How could I forget how sick she still was? How could I be so STUPID!?!
A long talk with a very sympathetic doctor assured me this wasn't "the end", it was just another bump in a very long diabetes lined road. A big bump, a serious bump, but just a bump.
DKA is bad, it can be life threatening, but the truth is no matter how hard we fight, no matter how much food we measure, how many carbs we count or insulin we inject sometimes our diabetic loved ones just get sick.
We have 504 plans, sick day plans, backup plans, and management plans but the bottom line is diabetes doesn't give two shits about our plans. How many times do we have to hear that diabetes doesn't follow rules until we stop trying to blame ourselves for this hideous disease's behavior?
Brandi's sick, she's been sick for a long time and although we had a pretty good year it doesn't mean that she's been magically cured. Her pancreas still doesn't work. Her adrenal glands still don't work. She still has seizures and her back is a mess. Nothing's changed so why am I...or any mom and dad of a diabetic...so quick to blame ourselves?
The truth is we work our asses off to keep it all under control. We go years without sleep, we stand toe to toe with doctors and insurance companies demanding our children get the best medical care, we write letters, we meet with our political leaders, we advocate, we educate, we do EVERYTHING right yet still blame ourselves when something goes wrong.
Nothing short of a cure for diabetes is going to make our kids better. But that's okay, because I....WE...are doing everything we can to fund that cure. We walk, we ride, we have galas, bake sales, and drive our friends crazy asking for donations...we do whatever we need to do to raise the money needed to keep those scientists doing the research to find the freaking cure we so desperately need.
I must stop blaming myself... WE as a community MUST stop blaming ourselves. We must take all that energy we're wasting on our guilt and harness it for good, use it to educate, use it to advocate, use it to help our kids grow up feeling "normal" and secure in the belief they can do wonderful things...powerful things, despite having diabetes. We need to teach them that diabetes hasn't made them weaker...it has proven they are stronger!
I want a damn cure and I'm not going to stop till I get one.
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