Thursday, March 10, 2011

Joshua

My nephew Joshua (10) dashes in from playing in the snow and calmly says 'Glucose Stat".  My sister Jill jumps up and follows him to the bathroom and administers some glucose.  When he starts to feel better Joshua pricks his finger and tests his blood.  The number is 54 - very low.  This is "normal" life for Joshua who is living with Type I Diabetes.  He has a pump into his abdomen and before any meal or any physical activity he checks his number (which should be between 80-120), calculates his carb intake and programs the pump to give him the correct dose of insulin.  But for the little cassette sized device attached to his belt nothing would tell you he has diabetes.  I am in awe of how he handles himself and how his Mom calculates important info on the fly to keep him safe.  She calls herself the Carb Computer and she is right. I am ashamed of how little I understood/understand about this condition so I am giving her some space here to do some advocacy on Juvenile Diabetes.
Jillian Gates writes:
Before I advocate for my son, I must say that he is one of my all-time heroes. Joshua became diabetic at the age of 5 and has taken the challenge in stride. Of my six children he has the perfect temperament to handle the challenges associated with living with diabetes. Every three days he has to have a canula inserted under the skin with a 1 1/2 inch needle. He never fusses, he never argues about it, he just lays still and compliments me when it's a good stick! In fact, we celebrate January 16 (his diagnosis date) every year as a special event. Not to celebrate the fact that he has diabetes, but the fact that he has had another healthy year. Another year of relatively good numbers and no major health issues. Joshua is fortunate that he has no co-occurring disorders that often crop up with Type I. 


The biggest challenge in keeping Joshua safe is at school. Diabetes is not a science, it is an art. Balancing blood glucose levels along with emotions, physical activity, and food intake changes at any given time. Sure, there are ratios that put us in the ballpark for bolusing him, but none of it is exact on any given day. How does one write this in a medical care plan? That has been our greatest challenge. We try to cover all the bases, but at some point nursing and parental judgment must come into play. This is the sticking point with the doctor. She does not want to allow for this wiggle room and we need it. 

Fortunately for Joshua and me, I work in the same building as Joshua attends school. I can assert parental judgment at any given time and override the nurse, but that takes an interruption to my teaching and is a constant frustration to the nurse who is powerless to do it herself. My question is what happens for kiddos who don't have parents in the building? This is where we must take a stand for students with Type I Diabetes. We need to demand the care plans we know our children need. Of course we need to be able to back up our demands with evidence, but the beauty of the pump is it downloads all the information from his blood glucose levels and insulin boluses so we can prove the need. We are fortunate that all schools in our district have a full-time school nurse. I believe that is not true in other schools in the US and Canada. Parents must come in and bolus their children during the day. This leaves Type I Diabetics very vulnerable and under-served and parents in a very difficult position regarding their own jobs.


Although Diabetes can seem to be an all-encompassing phenomenon in Joshua's life it does not define who he is. He is a 10-year old boy who is an avid sportsman, a gifted student, a video game freak, and a bossy big brother who happens to have diabetes. Joshua is not diabetic, he is a person who has diabetes. This is the verbiage we need to use when we speak about people who have a chronic condition. We must define the person first and the condition second, not the other way around. It is merely one facet of who he is, not his defining feature.

Thank you Nicky for the space to advocate for my hero, my son, Joshua!

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