Psst, You Need To Know This…not that!

It is day one of the fourth annual Diabetes Blog Week and my brain is challenged already! The prompt asks us to write about what you wish your diabetes team could see and what you don’t want them to see about your daily life with diabetes.

This is a real challenge for me because we are very independent in our diabetes care.  Our team seems to rotate players each time we go back.  Many of them are now well aware of the fact that we are confident and knowledgeable about diabetes and I like that. It’s not like we are new to this.  It’s not like I am guessing. I have been following the wisdom and guidance of some of the top diabetes people in the world for years–many of them are friends.

I would love for them to see those interactions. I think it may help them to understand the many connections we make and the great learning tools out there for people living with diabetes.  I would want them to see the amazing books sent to me and the questions I receive from others living with diabetes–this is what your patients need to know.

I would also want them to see that despite this knowledge and confidence, diabetes does not consume every waking hour of our lives.We behave as a normal family would and enjoy life, bringing diabetes along in everything we do only because we have to.

Diabetes does consume my nights and it has for over 13 years.  This is not something to be brushed off and I would love for all diabetes teams to remember that when they tell a parent that they are overreacting. This past weekend was my birthday and Mothers Day.  We celebrated with food and friends.  I tested my son at 3am on Sunday morning, found him high and corrected with his pump.

As I lay in my bed a few hours later, I began to panic.  My son had sat down to a movie with a tray of fruit in front of him. (I wouldn’t want our team to see that he weighed and measured none of that food) I began to wonder if he had properly washed his hands before going to bed? Did he had fruit juices on his hands? I never considered that at 3am but by 5am the thought was front and center in my mind. What if he was actually in range and I gave him all of that insulin to correct a non-existent low? I was scared to check him.  The joy of the evening before had disappeared. What if I had killed him? What if I had slept through a seizure and I had killed my son trying to help him?

By 6am, I forced myself to check him.  He had moved. His body was warm.  He was still high. He was fine.  I could breathe again.

This is something I would like my diabetes team to fully understand.  We, as parents and caregivers, live with this disease on a different level from many in the medical community. Living in the trenches is more than A1cs and following the Canada Food Guide.  We work to balance living life fully with diabetes and living life.  Please do not judge or trivialize this.  Please support us with the best possible tools and education.

To read how other bloggers answered this question, please click on the following link: http://www.blenza.com/linkies/links.php?owner=dblogweek&postid=02May2013h