When I was in college, my sorority had a Harley Davidson themed date party. We all got dressed up like bikers and went to this little biker bar on outskirts of town. It was fun. And funny. Here are a bunch of college kids from a very preppy, upper-middle class university pretending to be bikers. If I could find a picture.... You'd laugh so hard you'd wet your pants!
Anyway, we had t-shirts made for our date party (as we did for every date party and every other single thing we ever did). The shirts said "If I have to explain, you wouldn't understand".
I can't tell you how many times that thought has gone through my head during the past year. Not because I've been reminiscing about college date parties - because it's SO TRUE about diabetes.
If I have to explain.... you wouldn't understand.
I may have posted this before - I can't remember. It seems memory cells die off in large quantities with lack of sleep. It doesn't matter. It's worth reposting. I got it from Kelly and I don't know where she got it. It's great....
"No one could ever understand what a family goes through who has a child with diabetes. I mean it is ‘just diabetes,’ right? To those who know, no explanation is needed and to those who don’t, all the explanation in the world isn’t enough to truly explain.
Truth is, it isn’t ‘just ...diabetes.’ It’s a world that scares the hell out of all of us as parents. It’s a world where no parent should watch their child, or their children, suffer daily.
We don’t need to be told again and again that it could be worse; it could be this disease or that disease. We don’t need to be asked again for the millionth time, “Will they grow out of it?” We don’t need to hear from someone that it’s really not that bad to take a few shots. We don’t need to be called up to the school. We don’t need to worry if the falling down in soccer, or football, or lacrosse, or playing in the yard is part of their activity or if they are collapsing from a hypoglycemic reaction - and we hold our breath until they get up again. We don’t need that.
It’s these times. It’s the sleepless nights. It’s playing the diabetes police to our kids. It’s the feeling guilty on playing the diabetes police to our kids.
It’s the constant and burning wish that our lives be normal again.
OUR LIVES ARE NOT NORMAL.
But we don’t live like there’s a problem, do we? The feelings of fear, anxiety, guilt - and did I mention fear? - are kept inside though, aren’t they? They are kept inside because we want normal again, or as close to normal as can be, for our kids and for us too.
So we smile, we try not to overact when things go haywire, we smile when a relative we love says something stupid like “So you just cut back on their sugar, right?’ We cry alone, we cry in silence, but most of all we move on.
Most people just do not know what we go through because we do not live our lives in defeat. We try to stay upbeat.
But still, deep down inside we all have the fears and showing them outward is something we work real hard just not to do. But they are there, we all know they are."
I think we, as D Moms and Dads, do such a ROCK STAR job of handling this life we make it look..... EASY.
I think people look at us and think, "How bad can it be? It's just a few shots. Just a few site changes - whatever that means. You count a few carbs.... They LOOK fine. The child seems healthy and happy.... what's the big deal?"
What are our options here, really? Do we whine and moan and get all dramatic so people see that it's not so easy? Sometimes, I do. I admit it.
But most of the time, I think we just "suck it up". We put up that front that everything is fine. We don't want our kids to feel different. We don't want our kids to think of themselves as ABNORMAL or UNHEALTHY. We know that most people are not interested in the fact that we were up checking blood sugar 4 times during the night. People don't care that we're trying to figure out how the running around with friends activity is going play into the current blood sugar and insulin on board. We know people don't have any idea what we're talking about when we start using words like "bolus" or "IOB" or "basal rates" or "ketones" or other such language. We know that no matter how many times we've said that a) our kids will not grow out of this b) no, there is no pill c) yes, they can really eat sugar d) no, it's not really under control - that's kind of the idea behind a chronic illness or e) all of the above - we'll have to say it all again - probably sooner rather than later.
It's enough to make me climb on top of house and SCREAM!
I don't do that, though I am tempted. It wouldn't really make anything better and would most likely end with either me falling off the roof or the police coming to make me get down. Neither would be much fun. And poor J would be left to deal with D all by himself, either way.
So, I believe that the only thing left to do... is educate.
It has become my mission to raise funds and AWARENESS for type 1 diabetes. Because if I can't cure this blasted disease, then at least I can educate. The more who know.... the more who don't need an explanation... the better Sweetpea's life will be. She's going to have spend her life fighting this disease. She shouldn't have to fight ignorance, too. That's my job!
If I have to explain....
Maybe our new shirts could look like this....
Front: If I Have to Explain
Back : I WILL