“At most, someone else’s realization can act as an inspiration for others, offering guidelines for them to follow, but ultimately we each must do the work ourselves.” The Buddha. Does anyone who doesn’t have T1D really know what it is like? I think they can come pretty close. Others mourn for and with those of us afflicted. Those that are really close to us obviously feel it most intensely. Especially our mother and our father. The essence of the job of a parent is to create a safe and learning environment for us. A diagnosis of T1D of a child is a major “blow” to the family system. I remember learning about family dynamics and counseling in grad school and it being compared to a “mobile.” Some of you younger than 40 might not know what that is. I found an image to share with this short post.
Dear Parents. I’ve lived with this condition for 43 years now. I don’t know how I would ever have made it without my father, mother, brother and two sisters. They all were “affected” by my diagnosis and all that comes with it. Initially, I felt as though I was walking a tight rope and had no experience. No one else could get up there with me and hold my hand. Everyone else was down on the ground cheering me on, noticing with compassion when I “cheated” and catching me when I fell. As I entered college and through my twenties and early thirties I felt more like I was performing a balance beam act. The falls were less dramatic. I had learned enough to put a pad on the ground. The balancing was easier but the “degree of difficulty” was very high. Add to that, behavior that was not on the recommended list for people with T1D and, well….It was a daily struggle with a lot of bruises.
Then a major paradigm shift occurred in my life. At it’s core was the realization that I was 100% responsible for everything in my life, including the diabetes. I eradicated victim consciousness. Of course, it tries to pop its head up when I am vulnerable but I know that this is the real battle. This realization led me to more tools to use to manage my life from day-to-day. Instead of performing on the balance beam I was piloting a plane. The physical plane was/is my body, the fuel is the food I eat, the accelerator and acceleration system is the insulin and its delivery. I use test strips to check my ‘Altitude” (bg level). I had a CGM. Can’t handle the additional port hole after all these years. Plus it drove me a bit batty; it exacerbated my already borderline OCD.
I’ve developed three “levels” of pilot and co-pilot training. It is couched in a yogic and Chinese Medicine ‘canvas.’ The objective, of course, is to maintain a safe and healthy altitude level with regards to blood sugar. Can’t go high for too long, Can’t crash. Can’t land. Got to manage turbulence like stress and illness. Must be aware of and constantly checking things like port site and insulin degradation. Must learn how to negotiate fast swings in altitude levels. I like to glide. Level 1 training is the minimum requirements to staying in the air. Level 2 is exploring and discovering one’s current edge. Level 3 is how to push against and expand one’s edge.
In my opinion, the best thing a parent can do for a child with T1D is to teach, guide, bring him/her to the water, be in inspiration to “fly the plane.”