When Nora was diagnosed seven years ago I enrolled her in a diabetes research study. I figure any kind of research Dr's can do to either make my kids life better, more manageable, or cure diabetes, I'm all for. Now, Evy will join Nora. This particular study is helping the professionals learn more about how diabetes affects children, adolescents and young adults. She had to fill out a questionnaire about food, eating problems, low blood sugar, quality of life and family conflict. So this study is looking at various angles of diabetes.
This got me thinking...
As a Mom, to two T1D's, I'm so involved with the every minute details of D. The number flashing from the meter...what to do with that number...treat with insulin...treat with carbs. That I often don't think about all the other stuff! I mean, yes, I hear them complaining that they don't want to take their blood sugar, that they are tired of D, that their injections hurt, etc.but I get into a suck it up mode and kinda brush it off.
I shouldn't.
I need to let them feel pissed, happy, sad, mad, content...and whatever else D makes them feel. I KNOW it sucks but then I don't. I know it sucks for me...having to set my alarm every day at 3am and checking on them. I know I'm sleep deprived for all the checking, the staying up to make sure blood sugars go up...you all know what I'm talking about! But I don't KNOW how they feel.
I guess it really hit me yesterday. Nora, especially, is getting tired of the same ole D crap. She's angry. You look at her the wrong way and it's ALL over!! But she's almost 12. Hormones are FLYING...flying, I tell you!! It's walking on egg shells one minute and cracking up laughing the next. One just never knows! But she was filling out her part of the survey and in one of them she is to rate her feelings based on questions asked. Based on her answers...she worries about D...more specifically...she worries about dying!! My little girl. My 12 year old worries about DYING!! At 12, I was listening to Duran Duran, wearing my Treetorns, and guess jeans wondering what I was going to do on a Friday night BEFORE Miami Vice came on. I never thought about dying!!! Heavy...
She also thinks about D all the time...that it controls her life. That she will have problems in sports, exercise or playing because of D. She HATES to stop during her game/practice to test and treat. She just wants to be like one of the other girls.
On the flip side she answered that she has no problems talking with Dr's or Nurses about her D. That she has no problems with her family's involvement with her D care. That she doesn't have problems making friends or keeping friends because of D and that she isn't embarrassed about having D. These are the things that I love to hear. She is comfortable enough in her own skin to take her D and have people accept her for who she is. She ISN'T diabetes...she HAS diabetes. Plus, she is comfortable talking to her Dr's and Nurses about her care. I know grown adults who can't even do this!
I feel a little proud of her that she is strong enough but at the bottom of my gut I'm a little sad. Sad knowing she is worried about dying. Sad knowing that I can't change that. I can't fix it.
It is the truth.
It is reality.
I have some things I need to work on...(obviously!! and Evy, I know your reading this and rolling your eyes!!) I need to work on acknowledging FEELINGS. It's so easy to sweep them under the rug and deal with them later if at all. But this is important. Don't just treat the disease...the numbers. Treat ALL of it. The eyes, feet, internal stuff...the mental part of D. It's the complete package.
Every. Single. Bit. Of. It.
Do you have things YOU need to work on? Better numbers, making yearly eye visits, keeping up with Dr appts., going to your Dr. appts, checking your feet, talking to someone if your down/mad, acknowledging you feelings?
Think about it...I know I am!!
