Amber’s Awesome Angels

One of the hardest things to get people who aren’t parents of kids with serious or chronic diseases to understand is the fear.  The fear of loss of control of management.  The fear of not being there when something happens.  The fear of losing your child for something preventable.  The fear of your child growing up and not needing you to help them any longer. 

I belong to an email distribution list on Children with Diabetes for parents of kids with diabetes.  There was an email sent today from a mother whose daughter is about Amber’s age.  She told a story about a friend of her daughter wanting to take her out to a movie and a meal.  She talked about sending a scale along so that her daughter could weigh her food to be able to bolus properly.  She talked about how nervous her daughter was about counting carbs and bolusing without her mom there.  But mostly she talked about the fear.  The fear of not being there.  The fear of the unknown and not manageable.  The fear of making a mistake and harming your child. 

As a parent of a kid with diabetes this is the fear we live with every day.  I can describe what the fear is like to others, but you just can’t know.  And this isn’t meant to make people feel bad, like their empathy isn’t appreciated and helpful.  It’s just meant to say that unless it’s your kid, you just won’t understand.  We have to worry about Amber whenever we send her out to play.  We have to worry about Amber when she goes to a friend’s house.  We have to worry about her at school, on field trips, at day care.  We have to worry that we’ve trained her teachers well enough, that we’ve explained the symptoms of lows to the parents of her friends.  We have to worry that she eats all the food in her lunch, so that the insulin amount that we calculated at breakfast is correct and she won’t go low.  We have to worry that she’s not going to do well in class because of too many highs.  We have to worry about what she’ll do after school next year because she’ll be too old for day care.  We have to worry about her going low as she sleeps at night and not waking up.  It is a constant state of fear.

I hate that this damn disease makes us feel like that.  I hate that this damn disease is taking away the innocence from our kids, as they are having to deal with the same things. 

Diabetes sucks.  And everyone can understand that.