I know that I should be grateful that to say the least my kids are relatively healthy. We don't have to deal with chemo treatments and other unimaginable things. However, our life is not normal. In December 2008, our normal became a new normal.
I saw this posting on Hallie's website and it explains our life perfectly so I thought I would share.
"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 as parents of a Diabetic and the many more like us we are awesome and God knew that we would be able to handle this journey that we were going to be on.
I believe people have a tendency to look at us some and say how bad can it be. It's not a big deal with the site changes and the numerous finger pricks. The constant worrying that no one actually sees you going through is a totally different feeling. 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 1-2 times during the night (on good nights) it can be hourly checks when she is sick. 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.
There are days days I just want to go to the highest mountain and scream. But who would that help expect for me. I will continue to educate people and have them understand that Miss M will fight this for the rest of her life. Even though she may deal with this for the rest of her life she and others like her shouldn't have to deal with the ignorant people out there that choose to only understand it the way they want to understand it.
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