Friday, March 13, 2009

Narrative Exercise

One of my professors recently assigned us the task of externalizing an issue/feeling/hurdle that I am facing at present. We were instructed to describe it in visual or kinesthetic terms.

Diabetes is a constant companion for our family. It influences the activities we can participate in, what food we can eat, the time we can travel, the money we can spend, how we handle our health decisions, sometimes even how much sleep we are able to get each night. Like a cruel taskmaster, just when we began to be comfortable with Ethan’s insulin regimen, Diabetes attacked our daughter, Mary Hannah. Now, we are relearning the initial stages of the disease. Although very similar, Diabetes has manifested itself in very different ways in each of them. This causes anxiety for me and my wife as we have to treat them differently from each other in terms of how often they have to check their blood sugar, how much they can eat, what items they can eat (they have different foods that trigger higher than normal reactions in each of them). Also, Diabetes has also realigned the structure of our family system. Instead of Ethan being the one child getting the most attention because of his condition, with Mary Hannah and Eleanor feeling a bit neglected in terms of attention, now Eleanor is the odd child out, being the only one without a chronic medical condition that demands our vigilance. In our marital relationship, Diabetes sometimes sits between us and keeps us from having time alone because of our anxiety around child care for us to enjoy our alone time. For Ethan, although Diabetes is a dark monster that afflicts him, it is also a friend that made him special and now he shares his uniqueness with his sister. It is a bittersweet turn of events. For Mary Hannah, who has been “normal” up till now, she is dealing not only with the physical changes in her body, but the social ramifications of Diabetes. The unintended consequences of her disease have made her feel “weird” to her friends. She is the subject of intense curiosity and even a little fear from her classmates at school. Diabetes has teamed up with Depression and Anger to torment Mary Hannah when she tries to go to sleep at night and we often end up rocking her to sleep as she cries in our arms. Eleanor has enjoyed a privileged status as the baby of the family, but her coveted attention has shifted and she doesn’t like it. Diabetes laughs at our family and mocks us as we struggle to find normalcy in this difficult situation. Diabetes is an uninvited visitor in our home who refuses to leave. He’s unpacked and is here to stay. He frustrates us and constantly disrupts our daily living. We put up with him and go through the motions of placating him with blood offerings on test strips and ritual torture of daily injections of insulin. However, he has also brought us closer together as a family. We rely on each other to remind each other to check blood sugars, eat responsibly, exercise together and manage this disease.

The picture above is the plastic jar that we deposit used "sharps" or needles after we are finished with them.

By the numbers:
Average number of finger sticks done daily: 5 per kid. That's 10 lancets used. 10 test strips.
Times each month the kids check their sugar (based on 5 per day): 300
Cost per test strip: (before insurance) $1
Syringes used daily: 5-6
Infusion sites changed per month: 3-4
Amount of carbs consumed before having to get stuck again with more insulin: 25 (that is about half a peanut butter sandwich or 15 M&Ms)

Items that must be carried with the kids at all times in their insulin kits:
1) The kit bag containing all the supplies.
2) Calorie King guide to almost every food and how many carbs each contains.
3) Extra syringes
4) IV prep, alcohol swabs to prevent infection when giving injections
5) Writing tool used to keep a record of Blood Glucose and carbs eaten and insulin given.
6) Fast acting, bolus insulin. MH also has to keep her Basal Insulin with her.
7) Emergency Glucagon shot. If BG drops dangerously low and the individual is unable to take fast sugars orally, this shot chemically tells the liver to dump all the glucose it has stored into the bloodstream. It is designed to be injected through clothing into muscle. Extreme measure.
8) Glucometer to measure those pesky blood sugar readings.

-jeff

1 comment:

Deborah said...

Son, This is so poignant and deeply touches my heart not just for the kids and their illnes, but how the illness defines you as a parent and husband. I so wish I could take the burden of it from all of you.
Mom