Thursday, April 30, 2015

It's Not Like Much Has Changed, Right?

Q:  Now that you know they have diabetes and can manage it, nothing much has changed, right?

A:  I guess you could say nothing has really changed.  Our girls are still our little girls. They are the same little people we've always loved and cared for, but on the other hand, everything has changed.  

FREEDOM!!!  Well, it's gone.  Just gone.

Cooking is no longer simple.  Everything must be calculated for carbs.  Each ingredient in a recipe will contribute to the total carb count of any given meal.  Exhausting.  Add to that portions.  Yep, I now MEASURE every morsel of food. I can't just 'eyeball' what I put on the girls' plates.  It's my duty, my job to be sure I know what they are eating so I can provide them with the proper dose of insulin.  If they don't eat it?  I then have to determine what they CAN eat to 'make up' those carbs to prevent a low from striking.  Eating out?  A nightmare for me now.  It's not easy determining carbs for foods from a restaurant.  Sizes, breaded or not, it's. just. so. variable.  I can actually FEEL my blood pressure rise as I attempt to calculate their carbs to insulin ratio whenever we eat out.

All of life must now be calculated.

No longer can we simply 'leave the house'.  We must be sure we have our diabetic kits with us. We must check and double check that they are packed and well supplied.  If we leave without our supply bags it's not just a 'mere inconvenience', it's a potentially life threatening situation.  A severe low in either of the girls when we are caught unprepared could be disastrous.  A simple mistake of leaving their bags behind could result in a trip to the Emergency Room or worse all because we wouldn't have the life saving tools of glucogel or glycogon available.  On a much more trivial level, if we had planned to go out to eat, we can't -- not without their insulin.  Or at the very least they can't eat with the rest of us.  Think that's an easy pill to swallow for a 6 and 9 year old?  Nope, me either.  Add to this equation the fact we live in a pretty remote area.  It's not a 'quick fix' when we leave the bags behind.

Those fun family nights of 'throwing nutrition to the wind' and indulging in a nonnutritive meal of ice-cream and popcorn; simply to take a break from the every day?  Yeah, those days are limited at best.  If either of the girls' blood sugars are not under control, forget about it.  Ain't gonna happen.

Freedom is lost.

Not to mention adult time.  Techno and I can no longer leave the girls with our usual babysitters or any babysitter for that matter.  It takes a lot to manage and be comfortable managing the needs of a child with type 1 diabetes.  Let alone, TWO children with type 1 diabetes.  It's not a trivial matter.  A simple mistake can result in a life threatening situation for the girls.  Our older children, our teens, have been our primary babysitters for some time.  Can you imagine how ominous it must feel?  It's not easy to consider sticking a sharp piece of steel into a little person's body.  Even more daunting is the undeniable responsibility of figuring out carbs to insulin ratios. Then knowing if you miscalculate, you are putting your little sisters' very lives in jeopardy.  Not to mention the nerve wracking endeavor of being the watchdog for high and low blood sugars while mom and dad are out.  How to handle such a high or low.  What if one of the girls doesn't eat all the food they said they'd eat?  What then?  That's a lot to put on a teen - even very responsible teens like our big kids.  It's anxiety provoking for me and I'm an adult, their mama.  Training will be needed. For our teens. For ANYONE willing to watch our girls.  My bet?  That pool of possibilities shrunk exponentially when we received this diagnosis.

Then there's the freedom from the ever present knowledge of how diabetes impacts our lives.  Our whole family now thinks, eats, and breathes T1D.  It's ever present.  Not a day goes by that we don't think about carb to insulin ratios; highs and lows; complications of the disease.  In some sense we can't NOT think about it.  Not being diligent in our thoughts and actions concerning the care of the girls is dangerous, reckless, irresponsible.

Carefree conversations are now a luxury not the norm.  A day doesn't go by where diabetes isn't the 'focus', the prime subject matter of our interactions.

Loss?  Yes, indeed.

Freedom is gone.  On many levels.

To me?  That's a huge loss that is never ending.

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