Thursday, December 5, 2013

It's Not My Disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.
Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.
I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.
As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.
With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!
When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.
We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  ”Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.
I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

1 comment:

  1. This all sounds so familiar. It was funny when I got a call from Jacob's Nurse Practitioner the other day. I was driving when she called and Jacob was home. She wanted to make some adjustments to his settings for his OmniPod. I told her to call him and he will follow her instructions. He is only 11 but he knows way more about that machine than I do. He can fly through those settings faster than I can think. It is so hard to let go sometimes. Jacob was diagnosed at 2 and it seems like yesterday I was chasing him through the house to check his blood or give him his insulin.