I’ve had a headache for a week. And all these tears aren’t helping me one bit.
Mom of the year here has crashed. She is flat on her face. Lost in her emotions.
It’s all about J.
You know, I blog here every week like I know it all.
Like I got it all figured out and wrapped up in a pretty bow.
But I found out yesterday, that I will never know what my boys go through every day. I will never know their heartache, their fears, and their exhaustion from the day to day with this disease. I thought I was shielding them from the worst of it. I thought I was making things easy on them by doing the bulk of the work for them. I thought that diabetes was just a few seconds out of their day. That I was doing all the worrying for them…
I thought wrong.
Here is J. My responsible, straight A, bright boy. His teachers have always praised him for how ‘mature’ and ‘responsible’ he is. He has always been the ‘perfect’ kid and student. He has always taken his diabetes seriously, he has always tested, and he has always bolused. But this year is he is slowly falling apart. He needs reminders to check. I have to hound him after dinner to bolus for his food. I have to have ‘talks’ with him about taking responsibility for his body. After all, I thought, I have done it all for him up until now…how hard is it to take the initiative and remind yourself?
When he does fall off the wagon, (so to speak,) we have a ‘discussion’ and for the next week he is spot on…he checks at school and I think it all is better now. That the problem is fixed. But then the next week comes, and he ‘forgets’ to check again.
“How can you forget to check? You have an alarm on your pump and on your watch to remind you. What do you do when they go off???”
“I turn them off.”
“And you don’t check?”
“No, I don’t check.”
“Why? Help me understand why.”
“I don’t know.”
It came to a head yesterday. He hasn’t checked his blood sugar at school all week.
I didn’t yell…but I wasn’t kind. I lectured until I was blue in the face. I cried. He cried. All I could get out of him was, “Everyone expects me to be perfect. I wish I wasn’t smart, then no one would expect anything from me.”
“I don’t expect you to be perfect J. I only expect you to do your best.”
“What if my best, is sometimes perfect? I don’t want to do my best. I want to be like the other kids.”
We hugged. We came up with some ideas to motivate him to test. But I was still totally confused. I looked into my boys eyes and couldn’t wrap my head around what was going through his mind.
Until today. I read today’s article from Diabetes Mine…and it was the epiphany I needed.
Now that I have handed J the reigns…he has given himself the greatest gift he could ever ask for…
Freedom from Diabetes.
And I don’t blame him. (Man, it is really hard to type through tears!)
I mean, do you blame him? If you had the chance to sneak away from diabetes, wouldn’t you?
The risk is worth the taste of freedom to him. It is a high to be in control…to forget about diabetes for the day.
I hate that the road ahead isn’t mapped out for us. I hate that I have to live and learn, and that I will have to learn from my mistakes with J to help his other brothers when they get older. I hate that I don’t know what tomorrow holds…that we have to take it all day by day. I hate that I’ll have to pull out some tough love. That when he gets drunk on his freedom, I’m going to have to sober him up again.
This comment from a mother in regards to The Diabetes Mine article really hit me hard:
“Your story brought tears to my eyes as we face similar issues with our son 17 diagnosed at 22 months. Freedom as a drug is a great explanation for it and I never thought of it that way. That is why the artificial pancreas is not the cure, because our children will still not be free.”
My heart aches for my boys.
Until there is a cure, they will never truly be free.