Wednesday, October 15, 2014

Invisible Battles

I am writing this post feeling frustrated, sad, and more than a little angry.  I want to tell you a story of a little girl. This little girl was born struggling for her life. She spent days in the NICU, while doctors worked of clear an infection raging through her body. She hardly cried, even as she was poked in a new place each day for blood or new IV when her little veins wouldn't cooperate. As she got older, she kept that stoic persona but her big blue eyes didn't miss a thing. Her first words were "Me, too" because she wanted to be just like her sister. At age 4, she actually smiled when she skipped out of the hospital with her new diabetes kit- just like her sister. After the first day, the smiles only came between wrestling her to the ground to give shots between meals.  Oh, the tears she cried- everyday for 6 years. But, she battled through and the only people that saw those tears were us at home.  She played hockey, volleyball, and soccer. She went to school and hung out with friends. Very few people would say she wasn't like everyone else.  On her 10th birthday, she got an insulin pump, cutting the tears back by gallons but not the frustration and pain that comes with a life long disease. Now at age 17, she is still fighting that battle.  She continues to be active in school, recently elected president of DECA.  She plays hockey, works part time, and wants to tour colleges that will help her get into med school.   On the outside, she is your typical 17 year old girl.  On the inside, she cries.   My fear is that she is losing her battle.  In her effort to pretend she is just like everyone else, she isn't taking care of herself.  When she was little, I could do some of the work for her, take some of the burden.  But, now, so much is in her hands and I don't know how to help her find a balance that works for her, that doesn't make her feel like she isn't like everyone else.

In the last month, I have gotten a call from our diabetes educator regarding both girls.  She is worried. I am worried.  I wish it would go away.  I wish.  It is the simplest of sentences but yet so complex.  I was listening to a friend talk about the 3 C's of addiction that families must understand.  "I didn't CAUSE this."  "I can't CONTROL this." and "I can't CURE this."  In the middle of his story, I blurted out, "That sounds a lot like parenting children with diabetes."   That first C is a whole other blog post and that third C, I have written about before but that second C- that's the one I'm struggling with right now.  When they were young, control was what we fought for; good blood sugar control, that is.   Some battles we would win and many we would lose.  Changing dosages, times of delivery, more frequent checking of blood sugars, taking out this snack and adding in this one- all strategies to try and find that elusive control; the balance between sugar and insulin.  While we still strive for blood sugar control, as they get older the decisions they make are more theirs and less mine.  I can advise, punish, take a step back, nag, scream, and even cry to try and influence their daily decisions (and I have tried!) but they are not mine to make.  Again today, we sat with the educator searching for the answers.  We talked about progress in research, promising breakthroughs, and future appointments.  Unfortunately, none of those things are helping her right this minute and I lack the words to make this all better.  It is not an owie that a kiss or a funky band-aid will fix.  I tell her we are not angry at her, that we want her to be successful, that we are proud of her, that we understand this sucks.  I don't know what she hears.  I know she is angry at the cards she was dealt.  I know she is sad when she feels she is disappointing us. I know she wants to never see a glucose monitor again. I know just being a teenager and the trials that alone brings increases her burden.  In my mind, she is still that baby girl fighting for her life.  I want her to keep fighting.  I don't want her to let this disease win; it doesn't deserve to win.  How do I help her find a way to conquer what must feel like an unconquerable demon?  I wish I could slay it for her.

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