Wednesday, November 17, 2010

Being a PWD of a CWD

I've been feeling the need to write this post for a while, but I kept procrastinating.  Sarah's post the other day about her husband's confusion over her inability to look at her child's plate of food and just know the carb count reminded me that I've been putting it off (I hope I've interpreted that correctly, Sarah!).  I needed to find a night when I actually felt like talking about it, which is kind of hard to do.  Even tonight, I'd rather not.  But I know I need to, not just for myself, but for the other PWDs out there with CWDs.  That's Parent With Diabetes of a Child With Diabetes.  This might be a bit slow-going, but I'm going to try to get my main thoughts and frustrations out there in a way that other people can understand.....

When strangers first find out that Lily has diabetes, their initial reaction is sympathy.  I'm never bothered by that reaction.  I know most people are kind-at-heart and anything they might say or do that could upset me is usually done out of simple ignorance.  When strangers find out that I am also diabetic, the sympathy usually disappears.  It's not replaced with negative feelings though.  Just with a vague idea that since I'm diabetic too, Lily's diagnosis probably didn't devastate me in the same way that other parents, parents without prior knowledge of diabetes, were devastated.  Don't get me wrong, there are some benefits to being well-acquainted with diabetes at the time of a child's diagnosis.  I was still devastated, possibly in more ways than those of you who weren't as familiar with the disease.  But the long hours spent with educators and nutritionists, learning the ins and outs of diabetes, the hows and whys, the carb counting, and all those teeny little details that make such a big difference in our days....well, let's just say that the long hours were shortened into a few hours here and there.  I knew how to count carbs.  I knew about insulin-to-carb ratios, how an insulin pump works, why they're beneficial, etc.  But there's another side to that coin....

Being an parent with diabetes of a child with diabetes is like being the featured performer in a high-wire act when they only training you've ever had is years of walking the same familiar path.  There's a whole lot of emphasis on that analogy.  It's the absolute best I can come up with to describe what my reality is like.  You see, I had years of dealing with my own diabetes.  MY DIABETES.  I knew how much insulin I needed without counting up each little carb gram.  I knew what my blood sugar was before I tested.  It was a familiar path.  Sure, there were bumps here and there.  I knew, when I came to those bumps, that I just needed to move over as far as possible to the right side of the path and keep on going.  When those same bumps come along for Lily's diabetes, if I move over to the right, the high-wire is gone and I plummet to Earth, hoping that there's a safety net below to catch us all.  That plate of food that I look at and know how much insulin I need?  If I do that for Lily's plate of food and I'm off by even 5 grams, her blood sugar will either plummet or sky-rocket.  My diabetes and how I take care of myself has become "instinctive".  It doesn't require much of my thought anymore.  I know what's best for me and I do it, without thinking most of the time.  That's how MY DIABETES works.  One of the most difficult parts of being a PWD of a CWD is coming to the realization that MY DIABETES is not the same as LILY'S DIABETES.  Many of you are also followers of another blog titled Your Diabetes May Vary.  I love that title!  Because it is so incredibly true.  With LILY'S DIABETES, nothing is instinctive.  More often than not, I feel completely lost.  Because I'm her primary caretaker, the one in charge of her care from morning to night nearly every day, I've learned quickly that with her diabetes, precision is the key.  Everything has to be precise!  Food has to be measured into the smallest carb possible.  Insulin is doled out in as small of an increment as we can manage.  There is absolutely no room for error.  There is no looking at her plate and just knowing how much she needs.  Thirty extra minutes of activity that wasn't planned for and I'm left holding a little girl who's crying because she's terrified by the uncontrollable jerking that her body is doing.  One little piece of candy that wasn't bolused for and I have a little girl who sucks down water like she's been trapped in the desert for a week.  For Lily's diabetes, I have to walk that high-wire as carefully as I possible can.  I have no wiggle room when it comes to her health and well-being.

That being said, there's just one other thing I've learned as a PWD of a CWD that I want to share with all of you....sometimes, you just can't be perfect.  I know as moms, we feel it's our job to make everything as perfect as we possibly can for our children.  We feel that a hundred times more when our children have a chronic illness.  We get caught up in the idea that it is our "job" to keep their blood sugars perfectly on track and we beat ourselves up whenever an off number pops up.  Unfortunately, with children as little as Lily is, off numbers pop up a lot.  Here's what I've "job" is not to keep her numbers perfectly in line.  As much as I would love to do that, it's just not possible.  Growth spurts, extra activity, germs, everything throws a kink into the mix (add juggling all of those balls to my high-wire act!).  My "job" is correct her off numbers.  That's it.  Right there.  I'm here to correct her numbers when they are off and to try to do my best to keep her happy and healthy while she's off being the kid that she should be.  I want her to be as carefree and happy as possible and I refuse to burden her with her diabetes just yet.  I will educate her as much as I can and prepare her for when she's ready for that burden.  But I'll be the one to worry and carry the load while she lives as every child should.  That is what makes my efforts and stress worth it!


  1. Cindy...I love that you addressed how insulin and carb sensitive these little type 1 kiddos are. I think, unless you live it, you cannot even begin to understand how important a good carb count is... how every tenth of a unit of insulin effects their blood sugar and how they will spike like water shooting out of a whales blow-hole after breakfast.

    Thank you. Thank you. Thank you for this post.

    Have a great day friend.

  2. Oh great insight to both sides of the coin. Thanks again!

  3. What an great post. Thanks you! :)

  4. Thanks for posting this. I think it has been both difficult and a blessing in our home. I am truly thankful daily for the knowledge that Isaac will be okay and the proof being TJ.
    Enjoy your weekend.