Sunday, July 31, 2011


The other day, I caught Laura's post over at Houston, We have a problem.  Before I start in on my post for the night, I just want to say...I don't know the PWD blogger that's causing all the problems and I have no clue what the original post said other than what Laura shared.  But...Laura's post caught at me and hasn't left my mind since.  I have some things I want to say about the difference between being a PWD (person with diabetes) and being a parent of a CWD (child with diabetes).  Those two things are worlds apart!

There are a very few people in the DOC who have seen both sides of this coin.  It gives us a unique perspective and a whole lot more understanding of what diabetes is and what it is capable of doing to a person.  I was diagnosed when I was 9 years old.  I was self-managed from the very beginning.  I cannot recall a single instance when my mom tested my blood sugar or administered an injection.  It was all me.  I'd spend a year and a half before dx watching two of my older sisters deal with the disease.  I spent 22 years taking care of my own diabetes, through puberty, teenage rebellion, college, two pregnancies, and just day-to-day life.  And yet, all of that experience did not begin to prepare me for the choices I've had to make as a parent of a CWD.  Prior to Lily's dx, I was completely ignorant of how difficult it is to manage this disease in a small child.  I had no clue and could not even begin to comprehend what it was going to be like after Lily's diagnosis.  When she was diagnosed, I said all the stupid things....

At least she was diagnosed young and will never know life any different.  Yup, she'll never know a life without diabetes.  But, she'll also only know a life where growth spurts are potentially fatal.  Who could possibly have imagined that a teeny tiny little diabetic, when not checked in the middle of the night, could have a blood sugar of 28 because her little body is using every last bit of sugar to help it grow? 

Another thing I least we can get her on a pump ASAP and it'll be a little easier to manage.  There is no managing diabetes when the person who has it is so tiny!  I had no idea that at this stage in Lily's life, "managing diabetes" doesn't happen.  It's all about damage control and response.  If she high, you give insulin.  If she's low, you give sugar.  But, what worked well one day won't work the next.  Her body is constantly changing and so are its responses.  Having a pump does not make it easier.  It means more finger pokes, more invasion of diabetes into Lily's life.  It's a whole lot more work and a lot more stress.  For us, it's worth it.  For another family, it may not be what works best for them and their lifestyle. 

Oh, here's a good one that I heard a lot from people....At least you're already familiar with diabetes and will know how to manage it for her.  Yup, I know diabetes very well.  I know my diabetes like the back of my hand!  But, that's my diabetes.  My diabetes is not that of a tiny little girl.  Very, very different.  And to be honest with you, I think being diabetic made things a whole lot harder for me in some very significant ways.  I didn't understand that I couldn't control Lily's diabetes perfectly.  I was really hard on myself and beat myself up over my inability to keep her numbers perfectly within range.  I didn't understand how I could fail at this.  It took me a bit longer to figure out that I wasn't meant to be in control, I was meant to be correcting whenever I could, however I could. 

Those few things are just a sampling of how difficult it is to go from a PWD to being a parent with a CWD.  There are so many more differences.  Diabetes is definitely not the same in a small child as it is in an adult.  PWDs have no clue of how different it is unless they are blessed with a CWD.  And I truly mean that "blessed".  You see, before Lily was dx, I probably would have been judgemental of parents of CWD.  I probably would have thought that I knew a whole lot more than they did because I've lived life as a diabetic.  And the truth is...PWDs are completely ignorant!  Until you have a CWD, you can't possibly have a clue what it is like and how it should be handled.  The truth is that we can only figure out how best to handle our own diabetes.  Because it's different for everyone and it's different at every stage in life.  And honestly, ignorance is not something to be ashamed of.  Ignorance is fine as long as we acknowledge it and try to pursue to correct it whenever possible.  Judgements...that's something to be ashamed of.  Calling a CWD a "pussy"....most definitely something to be ashamed of!  And something to get down on your knees and beg forgiveness for!  Our children, with their callussed fingertips, the few hundred thousand needle pricks, and their love of life and activity, are so much braver and more courageous and inspiring than the people calling them "pussies" could ever hope to be!

My confession for the night....I'm a complainer.  Horrible complainer.  If something is wrong or I feel off or unhappy about stuff, I complain.  It's a sort of venting for me.  I complain and get the unhappiness out of my system and then I work to try to correct it.  My last post...that was a venting.  I was feeling trapped and needed to get it out of my system before I could work at getting some time to myself.  I complained, then talked things over with my husband (who reads my blog when I tell him he needs to) and then took off for an evening to myself.  I wish I weren't such a complainer, but sometimes, it just needs to come out so I can move on!


  1. Let's call it "venting" and not "complaining" and I totally think you do it in a healthy way. Dumping it so that you can move on seems productive to me.

    And...yeah...I got nothing for the PWD blogger that wrote the insensitive article. Perhaps that was her opinion, but maybe she could have stated it in a more diplomatic manner and it would not have been quite so offensive to those of us doing the best we can by our children.

  2. Cindy,
    I am a PWD and I am sorry that all you D Mamas have been hurt so badly by this person's blog post. I have the utmost respect for any mother that has the responsibility of taking care of a child with T1D.

    I would never judge a mother for caring for her child. I can't imagine the heartache, and commitment it takes. Not all PWD feel like this woman. We LOVE you D parents, and we are amazed by the bravery and courage you put into EVERY moment of EVERY day! You're my hero, and I mean that! :)

    FYI, I am 30 and have used numbing cream, and get up every morning at 3:00am to check my BG. Shots, site changes, and finger pokes hurt, and I'm not a wuss either. This lady needs to get a grip. You're doing a great job.

  3. Thanks for sharing your unique point of view. It's impossible to judge how another person's choices need/have to be made. And I love how you pointed out that everyone's diabetes is different and it's nearly impossible to judge one based on the other.

  4. OMGGGG. what have i missed? look i agree with you. i have alot of respect for adults with diabetes just like i do for parents who are being pancreas for their kids. theres also spouses caring for their partners. cant judge until youve walked a mile in someones shoes. totally know what you mean about growth spurts and the other innocuous seeming things that affect BGL's. its tough. good post.

  5. Thank you for writing this. It means a lot coming from someone who has been on both sides of the table. Lets us know were not completely nuts after all.

  6. powerful post from your perspective, thank you.

  7. Thank you for this, Cindy. I really appreciate your point of view...and I genuinely appreciate the encouragement.

    "Damage control and response".

    Perfect description.

  8. If you link the offending post, us Parents could help educate the offending PWD. I think all PWD and Parents, as well, need to listen to what the other person is saying. EACH child is different; EACH adult with diabetes is different. Diabetes must be analyzed on a case by case basis, analyzed in three hour increments over time. And with our DD changes occurred every four days, it seems, as well as the daily tweaking. What works for one child will not necessarily work for another; same with adults. It is the Parent who knows the child's patterns, makes the decisions. If another parent notices similarities between a child and theirs they may be of help; otherwise insisting that it is unnecessary to do overnight checks because your child only needs to be checked when X happens is not helpful. Parents also advise other parents based on their own experiences, ignoring what the other parent is telling them about how their child reacts differently. Respect the differences, respect each Parent's personal journey and offer support and understanding. And Parents: do not take advice from those who do not have experience with your particular child and/or medical professionals if their advice differs greatly from your own daily, monthly, yearly personal observations. It is well known that the younger the child the harder D is to manage, as well as the fact that D diagnosed in children is more aggressive and bears little resemblance from LADA or even Type 1 diagnosed as an adult. Personally, I think a lot of parents who don't check at night are following the advice of endos who are not really up to date. The use of cgms has proven that blood sugars fluctuate a lot more overnight than previously thought.

  9. I am thankful to hear your view on this as it is so similar of an experience to our families. I am amazed at how people thought it would be easy peasy for our family since TJ had d, I was mad as all get up when I'd hear this - even TJ thought "hey no problem," but one seizure into it and a year of no sleep has changed our view completely. It is beyond true that there is no way to understand this place until you are here, no words fully describe how it is to be a parent of a CWD until that is you - and even more I imagine the feelings of being the parent with d who then has a CWD has to be a whole other dimension. Thanks again for your honest sharing :)