A Fly on the Wall

I have often wondered what your days at school really look like.  How do you do it?  What does it really look like?  I hear random bits.  The girl that teased you, the test you had to take during recess, the pride when you know you made a good choice.

Yesterday I shared part of your day.  Your school had classroom visits, and I sat and watched you like a fly on the wall.

I didn't know that you wear your diabetes bag on your back the entire day.  I wonder if it is uncomfortable to sit with it on your back as you lean against your chair.  I see you go to the front of the class to write on the Smart Board and it is there-on your back.  As your mom, it seems to scream out "my daughter is different...she is not like the rest."  I ask you about it at lunch and tell you that you could take it off and put it on your chair.  "No, mommy- I want it on my back- I can't lose it there-it has everything I have to have."  I realize this bag represents your safety.  As long as it is on your back, you can take care of yourself.  In a world that I don't think you fully trust to take care of you, you seem to know that as long as you have your bag, you will be ok.

I watch you check your blood sugar before the math quiz.  You miss all the verbal instructions the teacher gives as you check.  You smile as you hold up the meter to show me the "104."  I remember you telling me how the teacher sighs if your blood sugar is out of range, and how much you hate giving up recess to take the quiz then.  I find myself once again wondering if the right thing to do is really allow you to reach your full potential by not taking tests when your blood sugar is high.  And, then I think what a ridiculous question that is.

I sit with you and your friends at lunch.  I see their lunches.  "See mom---see what they all have for dessert?" you ask as you hold up your one small peanut butter cup.  I am so sad as I think "but their pancreases work, and if they eat these desserts they will still be able to learn well...while you will be in a hyperglycemic fog."  I tell you I do see, and I promise to myself that I will try to give you a bigger dessert but realize that something else will have to go.  Your friends may be able to eat a 100+ gram carb lunch, but we have seen time and time again that the best I:C ratio does not hold with high carb meals.  I can't explain this to you.  And, I shouldn't.  But, I find myself hoping that someday you understand why your dad and I have done so many things.

And yet, I think you are happy.  You hate diabetes most days.  And, the lows and highs are relentless.  You still fear pump and dexcom site changes.  And, you do get teased.  But, you also have found good friends.  And, above all else, you are still just a ten year old girl.

I am so proud of you.  Every single day.  And, as I sit like a fly on the wall I almost tear up with this pride.  I know deep in my heart that this is YOUR life story.  I may have suitcases full of my own emotion and baggage about your diabetes, but they are mine alone.  You are living your life and triumphing.  I know diabetes has made you stronger and healthier than most your age.  I see how much more empathetic you are towards others that also have their own diseases to manage.  And, I know that because of diabetes you will do great, amazing things.  You are my super hero, Jess.

Together

This has been a rough week.

Numbers all over the place.

Almost zero sleep.

The fatigue. The emotions.  Expending so much effort 24 hours a day.

Complete exhaustion and seriously, I just need a freakin break.

Thursday:  I rush home in between meetings to pick the girls up from school in order to get everything ready for the babysitter.  I am greeted with Jessica visibly upset.  "Get me out of here...I just want to go home."  I quickly usher her out of the building.  She is in tears before we reach the car.  In the safety of the car, the floodgates open.

"They told me I couldn't finish my lunch.  They told me I had to throw out my food.  I told them I had Type 1 diabetes, and I needed to eat my lunch, but they wouldn't listen.  My friends told them I had Type 1.  She said she knew I had Type 1, but lunch was over and I had to throw out my food.  Mom, I had over 30 grams of carbs left...I was afraid if I didn't eat it I would get so low I would pass out." More tears.  "I was so scared, mom."

Jessica stood strong.  She refused to throw out her food.  And, so, the lunch aid went to her teacher.

Luckily, her teacher handled the situation appropriately and took her to the nurse, where she finished her lunch.  Although, why she couldn't have just finished it on the way to her classroom is beyond me.

The day devastated Jessica.  Having to stand up to an adult and say no.  At the age of ten, this is not an easy feat.  She was so upset by the time her teacher came, that she cried in front of her class.  Embarrassment, Humiliation, Fear.  All over some uneducated adult's decision not to listen to a child who knows her own health condition better than anyone else.

I was filled with so many emotions.  Extreme Anger.  It took all I could to go home and write a polite but assertive email, rather than rushing into the building and screaming and yelling.  But, also Pride.  Jessica knew what the right thing to do was.  And, when challenged she held her ground.  She did what she needed to do to make sure she was safe.  And, although it cost her humiliation, fear, and embarrassment...she did it.

But, it angers me she had to.  Despite all the hours and effort we have put into making sure she is safe at school, things like this still occur.  And, they will continue to.  Her school is amazing.  Her teacher, the nurse, and even the principal handled it well.  The principal even came to check on her later in the day and make sure she was ok.

And, it is not the first time she has been treated wrongly at school.  At her old school she was forced to check her blood sugar in stairways.  The nurse would psychoanalyze her sugars..."Now, Jessica...what do you think could have happened to make you 200?"

We have always responded quickly and assertively, but the truth is that these things will continue to happen and I know it.  A 504 plan, while a good start, can not fully protect our children when we are not there.

November is National Diabetes Month.  A time to remember to educate, advocate, and fundraise.  These are the tools we have to help our children.  We must educate those who don't understand.  Many will never "get it," but we at least need to know that they have enough knowledge to keep our children safe when we are not there.  And, we must advocate.  We need faster FDA approval, we need more funds dedicated to Type 1 research, we need life and health insurance policies that are fair and not based on lumping life expectancies of Type 2 and Type 1 diabetics together.  We need school policies that keep our kids safe, and that don't allow discrimination based on a health condition that is difficult to control.  And, we must fundraise towards a cure.

But, until then, we must support each other in this journey.  We cannot do it alone.  We are stronger, and our kids are stronger when we stick together.  Our life was changed by finding Children With Diabetes.  I wait impatiently for the next conference in February, where for one weekend we will once again be enveloped in support.  And, where we will have the chance to support others.


Together, our children will grow up healthy and strong.
Together, we will support each other.
Together, we will find a cure.