Privacy. My son is very private about his diabetes. He is very discreet when he tests or boluses. He does not tell people that he has diabetes. He does not like anyone to know when he is high or low. That scares me. I can understand not wanting to be singled out. I get not wanting to be "different" especially when you are in your teens but people need to know to understand. They need to know so that they can help you. As we saw the other weekend, he even keeps the highs and lows from me at times. Thankfully he now wakes me for the lows before he goes to bed at night but diabetes has become so routine for him, I guess, that he doesn't want any intrusions.
This desire not to be different led me back to another word that had been swimming through my head--disability. In Canada we get very defensive about this word. Many groups work hard to argue that diabetes is NOT a disability. I can see that view. People like my son do not want to be labelled. They are not in a wheel chair. They can feed themselves. They are not disabled.
But then there is that word "normal" and when you live with diabetes life is not normal. There is nothing "normal" about force feeding a child a peanut butter sandwich at three in the morning just so that they are able to wake up to see another day. There is nothing normal about making yourself bleed ten or more times a day just to be able to function. There is nothing normal about poking yourself with a needle just to stay alive.
Three words. Should you be private about diabetes? Is it a disability? Does diabetes allow you to live a normal life? Three powerful words. I have my own answers as a mother but they probably won't jive with my son's. The only one that I can clearly define is "normal" because long ago, a good friend told me that normal is only a setting on the dryer.
Hi Barb,
ReplyDeleteInteresting post. My daughter is a fairly quiet person (well not at home) but doesn't hide her diabetes. She has never seemed to care that her pump shows and I am gratefull for that. Although they don't look disabled, they really do have a life threatening condition and it's good for others to know so if anything happens people can help.
Does you son have any friends with diabetes? Danika knows a couple of people at school and has some of her friends from camp on her facebook so they can joke around about it. I think that helps!
Powerful post. I have a feeling Joe is going to be VERY similar to your son in his teen years...at least in the privacy dept. He does not appreciate attention for his diabetes. He doesn't mind the Walk...or me blogging...but, he does mind it at times in his day-to-day life.
ReplyDeleteOn the "disability" front...well I would say as long as they are euglycemic then, yeah...no disability. But, that answer changes when you have a person with a blood sugar of 38...and they cannot even figure out how to help themselves as their brain is rendered useless without sugar as fuel.
On the "normal" aspect...I agree with you completely...NOTHING is normal about this shit...but, it is only a setting on a dryer...so I try to be cool with it all.
Great post Barb, as always.
Hi Catherine. I must say that he is not paranoid about hiding his pump but he really does not like to bring attention to himself. He doesn't have any friends his age with diabetes, most of the people he knows tend to be adults.
ReplyDeleteThanks again Reyna!! My son has been okay about all that mom does that makes him public including being seen in the media although he has now asked that he not be named in things I do and he is done with the photo shoots and such for diabetes "stuff". It may be age but I do pray he finds his own healthy balance.