Thursday, October 18, 2012

Diabetes Detectors (or Veruka Is A Bad Nut)

Yesterday, as we walked out of my younger daughter's school, I noticed my daughter wasn't acting in her  "so-glad-school-is-over-what-is-for-dinner-can-I-play" typical manner.

Instead, her face looked sadly tired, her arms were crossed in an attempt to protect herself from the world and she seemed to be holding back a few tears.

I stopped walking on the sidewalk and gently took off her backpack and asked if she had a good day or bad kind of day.

"Bad", she mumbled. 

"Very, very, very bad." 

A couple of hot tears rolled down her flushed cheeks.  She looked at me with an accusing frown and said, "Why do you make me wear this?"  She pointed to her CGM sensor which was clearly visible on her arm below the sleeve of her brightly orange colored Halloween inspired t-shirt. 

I look to where she is pointing and at first glance, all I see with my mommy-colored glasses is a beautiful, well defined bicep muscle, formed from hours of playground monkey business poking out of her short sleeves.  She points her finger dramatically to get my attention and I then notice she is clearly pointing to one small, gray DexCom sensor.

"This!"  She is now shouting to release the pent-up emotions from the school day.

"Everybody asked me what this is.  They wouldn't stop.  One girl told me it was weird.  I told her to shut-up.  I told her to it was nothing and to mind her own business but she wouldn't stop.  She just asking and pointing.  She was so mean."

Now the tears are streaming down her face and she rams her head into my belly for hugs and comforting.  As I gently pat her back, I am acutely aware of curious parents and teachers who are also walking through the parking lot and witnessing the scene. 

For a moment, I wonder what they are thinking.  Do they think my child is acting out or misbehaving and as a result, that I am somehow punishing her?  Don't they realize what their own kids are saying at school?  Do they condone this behavior and why aren't they stopping it?  Who are these people?

But I can't dwell on these thoughts because I am holding an emotionally exhausted little girl who clearly is dealing with more than the average 4th grader. 

What's worse is that I don't even know what to say.  Denying the existence of inappropriate children would be to minimize the pain of my child or worse, condoning their behavior. 

I feel trapped because I know deep down that not one person in our school building (teachers, counselors, principal) would have the empathy or the knowledge to deal with the burdens that type 1 diabetes brings to our family.  Unless they live it, they will never understand the heaviness of living with t1d day in and day out.

The burden of type 1 diabetes while physically difficult is also emotionally isolating to all of us and especially, to my little girl.

I know people remark on the curiosities of the world.  Children especially, question anything outside of their own knowledge of normal.  Adults tend to have more tact but clearly, at this exact moment of comfort, we are both standing in the middle of the fish bowl.  This isn't our normal to stop, cry and comfort in the parking lot.  People are going to stare.

I can only imagine that happening all day long for a 9-year old with a CGM site on her arm, especially when that is not their normal.

My heart breaks for her.  The technology used to keep her alive is also the technology that quite often attempts to kill her spirit and self confidence.

I tell her the first thing that pops into my head which is this, "You did have a tough day.  I am sorry that you had to deal with that and it isn't nice."

I pause, wipe her face and hold her eyes with my own stare..... "And tomorrow, if she asks again, you don't have to answer her but if you do, be sure to look her right in the eye and say this helps me feel good.  If you don't understand that, than maybe you better go talk to teacher because I have already explained it to you."

I take my daughter's hand and I see that she is listening attentively, waiting for the wisdom only a mother can speak.

So I tell her this... 

"One day you are going to make a choice to have a career.  You may not know this now but experiences like this, will give you the understanding of how to help other children, and maybe grown-ups too.  You can take all of these feelings, remember them and then one day, you will be able to show the world how to be kinder and more caring to everyone else.  There is only one YOU and you are AMAZING."

I tell her one last thing.  "My darling girl, diabetes does not define you.  You are so much more than a CGM site and anyone who can't see past that is a fool.  Weed out the bad ones and you will be left with a group of the best friends anyone could imagine.  In a way, we are lucky that diabetes does that for us.  You have a built in meter right here."

I point at her CGM site, pretending to wiggle my finger like a lever.

"When someone asks too many questions or says something that isn't nice, this little CGM is going to detect that for you.  You just drop them like a bad nut." 

 My reference to the modern day Willy Wonka movie gets through to her.  I can see her thinking of the Verukas of the world and know that she is placing that girl from today into Veruka's shoes as a "bad nut".

(Conversely, I am doing the same with the parents. I don't tell her that though.)

We look at each for a long moment and then I see a faint smile and she asks me, "What is for dinner?  Can I play?" 

For the moment, she is going to be OK. 


Lani said...

Brought tears to my eyes, beautifully said Mom, kudos to you, your daughters are so lucky to have a mother like you, you inspire me!!!

Naturally Sweet Sisters said...

Thank you Lani. Sometimes, after the train of kid-sadness hits, I don't feel so inspired. But reading your kind words helps. T1D is so full of ups and downs.... hoping for a much smoother weekend and a little time away from the Barukas of the world!