July 9, 2008

Go Read CWD, It's Shorter There

There is an interesting thread over on the Children with Diabetes forums, well OK there are often many interesting threads at CWD, but this one in particular got me thinking.

I tend to get long winded when thinking. - You probably know that.

Anyway the tread is titled The child or parents choice. It is about who chooses to go on the pump particularly for 8 and younger kids. I recommend you go read it and join in.

Naturally it got me to thinking about why we put our 8 year old on a pump and how that decision happened. It was really quite simple. We put an 8 year old on a pump because her brother was on one and she wanted too.

A lot of her experiences with diabetes have kind of been monkey see monkey do. I mean that in a loving way - honest.

I often feel a little like if she was destined for diabetes Connor had to get it first to show her the ropes. He is that good of an influence. (Don't worry he is at camp and won't read this and get a swelled head.)

For the first few days after she was diagnosed (by us in Disney World) she was into it. She was doing blood test and she doing her own shot in no time. She was, in her words, “in the diabetes club.” That didn’t last too long, reality hit home but it sure helped us get past our shock of a second diagnosis.

I can say first hand from that experience that a second diagnosis is no less emotionally devastating than the first. You just know what to do about it.

Where was I? Oh yeah pumps.

The kids didn’t start pumping at the same time. Yet once he choose to pump, the die was cast for her as well.

We felt that Connor’s transition to pumping was an important opportunity to help him take a step toward independence. Independent diabetes care has been our goal since the first days of Connor’s diabetes. Melissa and others beat it into us.

Interestingly the same internet friend helped us at the points of diagnosis and choosing to pump. This is the kind of friend who knows you need a laugh around about the second day after diagnosis. So he wrote us about his type 1 and making shooters from needles as a kid, you know an irresponsible influence.

We met this internet friend face to face at a fireworks party in Epcot a few days after diagnosing Delaney. It was an Ice Cream party. He had on pump. He sat down with Connor and talked at length about both ice cream and pumps.

Connor was sold. “All the Ice Cream you want dad, you just push a button!”

So my deal with Connor was that he had to learn how the pump worked and pass the written test at Children’s Hospital. That is a lot to ask of a fifth grader but remember we are talking about “All the Ice Cream you want!”

A year later, Delaney was ready to pump. Monkey see Monkey do. She choose to pump too. She was in the second grade and I didn’t make her take the CHOP test. She had lived it watching Connor. She picked it up as fast as she picked up testing and shots.

Just like with self testing and self injecting there were bumps in the road. Reality set in - in the form of set changes. Fortunately there was numbing cream.

I wrote that pumps are not about insulin infusion. They are about holistically improving the quality of life for families dealing with type 1 diabetes. Oddly that thread ended up talking about basal rates. OK I think I had a (big) Gin and Tonic that night. Good start, lousy ending.

In retrospect the single most useful part of out experience in moving to pumps wasn’t pumping. What was most significant was helping Connor and Delaney see that they could make diabetes life choices and they would be a big part of making those choices happen.

So my conclusion after all this long windedness is this: There is more long term value in letting the child choose to pump, to help them learn to start the mastery of their diabetes lives, to move to independence, than the huge value of pumping alone.


  1. BEAUTIFULLY written. I love what you said over on the blog too. I appreciate it. You can be my spokesperson any time.
    GREAT parenting!