Thursday, June 17, 2010

Sick of Lemonade

I’m usually a relatively upbeat person.  I don’t complain a whole lot.  I try to look at the positive side to otherwise negative aspects in life.  I strive to make lemonade out of all those damn lemons we all get hurled at us now and then in life.  That’s what we’re supposed to do.  Right?  
I mean, I have even tried to put a positive spin on Jenna’s diabetes when naming my blog.  The very first blog post I wrote explains how the name came about.  It was my attempt to make sense of what was happening to my beautiful baby girl.  I knew from a nursing perspective what type 1 diabetes was all about, but from a parent perspective?  Not so much. 
I haven’t really experienced any prolonged feelings of anger or rage about Jenna’s diabetes.  I’ve certainly had acute bouts of anger born of frustration, like when I’m getting up every two hours in a night trying to deal with a stubborn high blood sugar (such as tonight, which is why I’m up blogging.)  
But if I were to describe my overall feelings with regards to Jenna having diabetes it would be that of profound sadness.  Sadness of a grieving nature.  The kind of sadness that caused me to lose a shocking amount of weight after her diagnosis because the thought of eating made me ill.  I was actually angry at food for a while after her diagnosis, oddly enough.  But I never blamed anyone for her getting this disease.  It is what it is.  And tragically, Jenna is one of millions of people who suffer with this damn affliction.  We all know diseases such as type 1 diabetes are out there but none of us truly believes it could happen to our child.
I try to be positive about it though.  Mostly that’s for Jenna’s benefit.  I certainly don’t want to be a bitter, angry Mom due to her diabetes.  That would only make her bitter and angry or perhaps she would eventually feel responsible for being the cause of my negativity.  I wouldn’t want her to carry that kind of burden on top of what she already has to cope with.  Also, I don’t want Jenna to ever think she should be pitied or that she can use her diabetes as an excuse for why she can’t do something.  That would be like clipping her wings.  And she was born to fly.  
I have stated in a previous post that I have learned to accept her diagnosis.  But that should not be interpreted as me being okay with the fact that my little girl’s pancreas has been attacked by her own immune system and, as a result, no longer makes the insulin she requires to live.  I am absolutely NOT okay with that.  It merely means I have dealt with the initial shock and overwhelming, crippling sadness that I once felt.  I had to do this in order to carry on and be the mother that my two little girls need.  
Type 1 diabetes is an incredibly misunderstood disease.  Some believe it can be brought on by eating too much candy.  Others think that once someone is on insulin they are cured.  Still others believe that in this day and age, no one dies of type 1 diabetes anymore and if someone does die, well, he probably didn’t take good enough care of himself.  All of these beliefs are false. This disease is chronic, constant, relentless, unpreventable, unpredictable and, as yet, incurable. 
Living every day with diabetes is like living with the Grim Reaper standing just a few feet away from you - quietly, patiently, biding his time, waiting for an opportunity when you aren’t looking... 
Some nights when I can’t get Jenna’s blood sugars to come down and she starts showing ketones in her blood, or when she has a scary low that I was lucky enough to catch, I sense that death has briefly take a step closer to my baby girl.  It terrifies me. 
Some people who don’t know might think that is a bit dramatic.  I’m sure most people with type 1 diabetes would agree with me when I state emphatically that it is not. This disease is frightening.  And what makes it so frightening is how much diligence, care and conscious effort it requires to stay safe and healthy all day, day and night.  Every.  Single.  Day.
But the real bitch of this disease is that no matter how much care and diligence is taken, sometimes people with diabetes still die.  Just in the past two months alone I have been made aware of three deaths of young people with type 1 diabetes.  The youngest victim was a 13 year old boy with his whole life ahead of him.  I have a lot of difficulty reading about these tragic stories, for reasons that are all too obvious.  
I read recently that the most common cause of death in young people with diabetes is from insulin reaction, causing severe hypoglycemia.  
Imagine that!  Death by the very thing that has saved you countless times in the past!  I can actually remember my emotional reaction many years ago, long before I became a mother or a nurse, when I learned that type 1 diabetics are in constant danger of dying due to insulin overdose.  I was horrified!  What kind of sick irony is THAT?  And now I’m the mother of a child with type 1 diabetes.  And I get up multiple times a night to make sure my little girl is safe and her life-saving treatment isn’t poised to take her life.  Or conversely, that her treatment is doing it’s job and protecting her from diabetic ketoacidosis - another deadly condition that can develop from not enough insulin.
People are uncomfortable when someone speaks to them of an unfortunate event or circumstance that they are coping with in their life.  Often the person listening feels compelled to offer a reply of “Well it could be worse, you know” or “You think you’ve got it bad!” as if pointing out why someone’s misfortune isn’t as bad as someone else’s is actually helpful.  Really, this approach serves to help no one but the listener, easing the discomfort they feel from not knowing how to respond when someone else has experienced something shitty in their life.  So to spare people that discomfort and to spare me having to hear, yet again, why someone thinks I should be grateful, I don’t often focus on the dark side of this disease.  I put forth a positive, “this won’t bring us down, no sirree!” type of front.  No one likes a complainer.  
But I’ve bared a  little more of my soul in this post.  Even though I am, in fact, grateful, probably more so than the average person,  I’ve shared some of the darker side of type 1 diabetes. Because the fact is, most type 1 diabetics are the furthest thing from being complainers.  They are SURVIVORS.  They are incredibly courageous people who cheat death every day of their lives.  They endure frequent bouts of physical and emotional stress.  They are performing a never-ending tightrope act with no safety net.   They deserve to not live in fear.  They deserve our respect.

And they deserve a cure.


Lee Ann Thill said...

That was beautifully written. I too get sick of making lemonade, but I keep trying to make the best of it because what's the alternative? It's a relief though to have these moments when you can set aside the mask to recognize and express the frustration.

Sysy Morales said...

Your post made me want to cry! I've been type 1 for almost 16 years (since age 11) and I just want you to know Jenna is lucky for having a brave mom such as yourself who is actively supporting the cause for a cure. I too write a blog and usually lean towards positive writing. This doesn't mean that every so often I don't absolutely break down. Its normal and to be expected and helps me release negative energy so I can continue to be positive. Thanks for your post. I just interviewed my parents who raised my sister and I both with type 1 diabetes that you may find interesting and relatable. is my site. Hang in there!