Tuesday, January 11, 2011

In all honesty...

I have something big to say tonight.  Bigger than anything else I've said in any other blog post I've put up.  I'm sure it's no secret that there's been a huge outbreak of "diabetes burnout" in the DOC in the last couple of months.  Not sure what "Diabetes Burnout" is?  It's when you reach that point where you're so fed up with all this disease requires that you just want to scream.  Or bang your head against a brick wall.  Or beat diabetes into a bloody, spineless pulp.  Oh, I so understand that feeling!  And anyone who has ever gone through even a day with diabetes can relate to that feeling too.  I get it.  I have moments when I suffer from the burnout too.  Especially since Lily was diagnosed and I'm dealing with not just my own diabetes, but hers too.  I get it.  But here's the thing....Diabetes is not our enemy.  Seriously, I mean that.  It's not the enemy.  And neither is our faulty immune systems or the various other factors that may or may not have contributed to our being diagnosed with diabetes.  Diabetes sucks.  It does.  But, so does being short.  Or being fat.  Or a million other things that we could be.  And here's the thing I want all of the other parents of CWDs....I cannot separate myself from my diabetes and your children won't be able to either.  Diabetes is a part of them.  Diabetes is a part of me.  It's a part of who we are and it will be a part of how we define ourselves.  That is a truth.  I am a person living with diabetes.  If you take diabetes away, it doesn't take away my history with the disease or the manner in which I've had to live my life for the last 24 years.  Diabetes is a challenge.  It is something I have had to learn to deal with.  It's not easy.  Challenges aren't supposed to be.  But the degree of difficulty it adds to my life does not make my life worth any less.  If I'd known my child would develop diabetes, I still would have chosen to give birth to her.  We, as parents, need to embrace the challenge that diabetes offers.  I'm saying this because of the whole "what we teach our children" thing.  If we, as parents, accept the challenge with grace and determination, then our children will learn to do so as well.  If we approach diabetes with resentment and anger, they will learn that from us as well.  My suggestion....when you're nearing the "diabetes burnout" point, do something that goes against what diabetes usually requires.  Push it to the back burner for the day and take your little diabetic out for a cupcake.  Let both of you forget about diabetes (for the most part) for a few hours while you enjoy just spending time together.  Burnout is going to happen, but we can try to hold it off and circumvent it as much as possible.

Here's the other really big thing that goes along with the whole "diabetes burnout"....there's a big misconception in the DOC.  At least, from what I can see, there is.  I've been diabetic for 24 years.  Self-managed since diagnosis at 9.  I can tell you, in pure open honesty, that there was no hope of "controlling" my disease until I finished growing.  Once I became and adult, I was able to control my diabetes in a way that was inconceivable before.  Part of it was a new level of intellectual maturity.  But a bigger part of it was just that my body was done growing.  When I was a child, I remember my A1Cs running in the 9-10-11 range, or even higher.  My two older sisters remember this too.  Insulin pumps have made huge improvements on that, but the fact is that a child who is still growing is not one whose diabetes can be controlled.  I think as parents (and I'm guilty of doing this too), we assume that it's our job to make things perfect for our child.  We feel like we should be able to "control" diabetes for them.  Oh, how I wish that were possible!  But the fact is, it's not possible.  Every day brings something new.  A new germ, a new growth spurt.  A new tiff at school.  Heck, every little thing upsets the balance in those little bodies!  Stress hormones, sleep, activity, etc.  It all throws a kink into the line.  And as much as we might like to, we can't force our children to grow up in anti-social little blow-up bubbles to keep them safe.  They're going to have extreme feelings, extreme activities.  They're going to be kids, first and foremost!  And we have to let them be kids.  Controlling diabetes will definitely become more important as they get older, but until they reach puberty, diabetes complications shouldn't be a huge concern.  Until then, we need to just live in the moment with them, correct the highs, treat the lows, and keep on chugging towards that magical time when they're grown up, capable of controlling the worst of their emotions, and mature enough to know that diabetes is a part of their lives that they need to pay attention to and care for, without allowing it to hold them back from life.

This is one of those moments when I wished all of the DOC lived close.  I'd make you all go out for a drink with me so we could all relax and rid ourselves of the burnouts.  Since we can't do that, I'll suggest instead that you all take a deep, deep breath, close your eyes, send a prayer up to God (or whoever you worship) for a cure for juvenile diabetes, and then take one last breath before jumping back into the game.  Life is beautiful!  Diabetes can't take away that fact and in some ways, it may even add to the beauty and help us to remember to stop and look at what blessings we've been given!


  1. Id like a drink please lol. For me my form of therapy is my blog.
    I never ever cry or sigh or show my frustration with D to Justice. I never say it sucks unless he initiates because I dont want him to feel like a burden or like he cant enjoy life. I think everyone needs an outlet so that it doesnt spill onto the kids plates.


  2. I'll take that drink too! :)

    Seriously though, I appreciate your perspective on diabetes and your experience too. I hadn't looked at it that way at all. Life is beautiful! I SO needed that reminder. :)

  3. You and my husband share so much of the same viewpoints. I think that it's greatly benefited us to have his experience with t1d as we deal with it with Isaac, truly the only difficult aspect is how he seems to have "forgotten" how difficult it is when the growth spurts are occurring. I think this may have more to do with his mother really babying him a long time than anything, but that's a whole other story!
    I appreciate your insight and know that others in the DOC do, too!
    Take care.

  4. Thank you for this!!! So nice to read something optimistic :-)
    I try really hard to not let D control our lives and let my little guy be a kid first. We have great tools today that enable us to manage D so much better than 10-20 years ago (as you can surely attest) Love the advice to just go get a cupcake (we can deal with the number later) This is a great reminder for all of us!

  5. AWWWW Cindy...GREAT post and you are right. Funny how I am already dreading the A1C that we will be obtaining in a couple of weeks b/c I have been boosting the shit outta Joe's numbers for hockey and skating. He practices and plays for the team 4 days a week and on the other days he skates in our backyard for 1 to 3 hours a day...HARD. It has been a challenge for sure, but I have always vowed he can do whatever he sets his mind to. Thanks for cementing that in my head...sometimes I wonder if I am crazy - LOL.

    AND...I am so into that "drink" with you and the girls.

    Love to you.

  6. From a Newbie parent, Thanks! No I don't have Burnout- least not yet. I'm still in the free fall from the lack of control I now have over rollercoaster numbers. I so appreciate your viewpoint and am looking forward to digging deeper for a fresh perspective and encouragement!