Sunday, May 11, 2014

I want... I wish...

I'm participating in a diabetes blogweek.  For more info check out Bitter-sweet
The first prompt:
Change the World - Monday 5/12
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Had a conversation over the weekend with one of my best friends.  We were discussing her daughter who had said she wished she had diabetes 'cause then she wouldn't have to take her showers and breathing treatments for her asthma.  She is Sugar Bear's age.  My friend told her that she shouldn't wish for that, that at least with her asthma she has a chance of outgrowing it.  And her peanut allergy is not the same either.  They are careful so she doesn't have a reaction but it is a "mild" allergy.  Our conversation then went to discussing the Girl Scout troop they are in and how they have a function coming up where everyone will be bringing food.  They have two newer Moms and one of the newbies told the other, her friend, that she should bring that "peanut butter dish".   Even after the troop said there was a peanut allergy this woman said "you should bring it anyway".  My friend was aghast.  I was furious.  Food issues are not a fad!  Gluten free is not a choice for many.  Allergies and food issues can be deadly!  I wish there was a way to raise awareness.  That is my biggest drive.  It seems unless you have some disease or food issue in your immediate circle you are blissfully unaware!  And can come across as unkind and insensitive.

Before Sugar Bear was diagnosed I was very unaware and uneducated on type 1.  My husband had been diagnosed with type 2 and I kept trying to make Sugar Bear's disease the same.  It's not.  It's a completely different monster.  There are days (many) where I wish with my whole heart to go back to blissfully unaware.  Sugar Bear will never outgrow his disease.  It'll always be there.  It'll effect every decision and thought and plans.  It will sit in the back of his brain, like a shadow, a storm cloud.  He'll fight, cause he is brave and strong and stubborn.  But it will never go away without a cure.  It's now part of him, part of us.

Now my awareness is there and I try to work towards information, education, and fundraising.  I want doctors to be more aware so no one has to experience the diagnosis nightmare of a child in the ICU, or DKA coma, or death.  I want pediatricians to make testing part of the well child check and especially checking when there are symptoms of flu present.  I want advances in treatment so one day my son's tiny fingers aren't so calloused and his arms aren't so bruised.  I want a cure.  None of this
will happen just by wishing and wanting so I'm slowly getting involved.  I will be walking at King's Island in less than a month to raise money for JDRF (juvenile diabetes research foundation) and Team Sugar Bear has raised a little over $700.  My husband, my brave teenager that is needle phobic, and myself are doing TrialNet at the end of this month.  I've joined a few online communities for support, have attended a diabetes conference, and am writing this blog.  Every little bit counts.  After watching that little boy on the floor of the concession stand at the drive-in with over a dozen people around him not knowing what to do (see my blog I. Hope He's Alright) I know I have to do something so that doesn't happen again.  So it's never my son at the mercy of people so uninformed.  One person can make a difference.  I believe that we can make this monster stay in the dark corners if not eventually get rid of it altogether.  I will work towards that goal for the rest of my life for the millions of children and adults who fight the monster that lives inside them but especially for one little boy who is my hero.


  1. Well written and we're lucky to have you on our side!

  2. Very well said, and thank you for all you do.

  3. Thank you for being such a thoughtful advocate.

  4. "like a shadow, a storm cloud" - YES. This is a beautiful (and all too accurate) way to describe what it's like to live with diabetes

  5. Congratulations on your fundraising! And, what a great model you are for your son - what you are advocating for will change his world & many others'.