A couple of days ago...in the car, on our way to school...
"OK Joe, so I'll bring your LEGO Ninjago Space Ship~Thingy and Catching Fire for the Endo visit." No comments on the Catching Fire. Bridget read it. Yes, violence. Yes, it, the violence, isn't as "depersonalized" as Star Wars with it's Lightsabers, or as Harry Potter with it's "STUPIFY", etc. I know ... kids killing kids with spears, arrows, and hand-to-hand combat that is organized and sensationalized by the government to instill fear in the "governed" seems to be a bit inappropriate for an eight (almost nine) year old. After typing that I realize that... indeed ... yes, I suck.
Back to the story at hand...
"Oh... and... Joe, please try not to laugh when the doctor examines you. He is a diabetes expert and he needs to look you over to see how your body is doing with diabetes."
In the rear view mirror, I see Joe's eyes widen. "You mean he is the best at diabetes in the world."
"Ahh. No. Well, I don't know exactly Joe. Let's just say he is the best at diabetes in children in our region. How's that?"
"mmmm" Joe seemed satisfied with my shifty response.
I dropped Joe off at school. I had a couple of hours before I needed to return to grab him for the Endo appointment. Now, usually I am not too thrilled to be going to Endocrine appointments. It seems that they coincide with a bad batch of blood sugar trends. I have felt that I was going in to "face the music". I have had "defensive manifestos" prepared for my actions with the pump, with boosting, with letting the settings ride. This time, however, I felt confident. Joe's numbers have been steady. Diabetes has been in the periphery of our day-in-the-life. Joe's last A1C was 7.3%; his highest, since pumping. I was hoping for a 6.6 to a 6.9%.
With Lego Ninjago thingy and Catching Fire in hand, I collected Joe from his school and off to Endo we went. While entering the parking garage, I saw a stretcher with a covered body being loaded into a hearse. I scope out Joe's focus. He saw it too; the body. He thought it was being loaded onto an "ambulance" and he did not understand why the persons head was "under a maroon colored sheet". I explained that the person was dead and that the body was being taken for burial. Joe chimed in "so the doctors did everything they could to save that person and they just couldn't". So... do I just go with it? Or, do I let him know that "life" isn't always the "best outcome" for the patient. I let him know ... the truth. This upset him a bit. The part that a person would choose death over treatment options. He wanted to know that I would always choose to treat anything that comes my way in the "medical condition" department. I reassured him that I would at this stage of my life... that I would do everything possible to ensure that I would be here for he and Bridget. A simple "good", was his response.
After the "body" sighting and deep discussion we headed into our appointment.
The Endo visit was uneventful. Joe's A1C was 6.9%, with a fairly tight standard deviation.
We checked out. On the elevator to the parking garage, an elderly man in a wheel chair joined Joe and I for the ride. I looked down at the gentleman's feet. He was missing one. His prosthetic was visible. I notice Joe's eyes were taking it in (face palm... I don't think I can handle another deep convo with this kid today). We departed from the elevator; from the one-legged man. Joe said nothing for a few moments. Then... "I think he lost his foot racing dirt bikes Ma."
A day-in-the-life of trying to parent a kid through doctors visits at the hospital.
Thursday, April 19, 2012
Saturday, April 7, 2012
I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.
Mid-spread of the peanut butter on Joe's sandwich...
I stopped dead in my tracks...and did an about face to Joe.
I had been busily preparing breakfasts, lunches, Joe's Daily Diabetes Log, and micromanaging my trolls (my children, I can call them that) hygienic needs prior to our departure for school. Amidst the scuttlebutt, I was discussing next year with Joe. I was lamenting our "good-bye" to his current School Nurse. I was planning out our "care-plan" for next year. I said something like "...and next year we will run it the same...all your care in the classroom...except for lunch."
Shifting his weight, Joe seemed to struggle with the information he was going to share with me.
"Ahhhhhhh...Mom, none of my care is being done in my classroom."
"What? ... For how long Joe?"
*a disheartened ----*
As many of you know, I had worked diligently at the beginning of the school year to get more of Joe's care transitioned to the classroom. We had a plan in place. I thought it was being followed. I was under the impression Joe was not missing as much classroom time and I was under the impression that his days seemed more "normal" and "acceptable" to him. In fostering this plan, I had really backed off on my presence in the school. I drop off The Woodchuck to his classroom daily, but that is it. I had not met with the School regarding Joe's care in quite awhile. Things seemed to be going smoothly; I had become complacent.
Perhaps this issue doesn't seem like a big deal to many of you. Perhaps it seems trivial. It's not. It takes knowing the day-in-and-out of diabetes management intimately to truly "get it". During the school day, Joe requires a minimum of three blood sugar checks a day. On a Physical Education day, he requires four blood sugar checks. If he is experiencing lows, he could need many more checks. Each of these checks requires him to go to the Health Office. Many of these checks requires some sort of action: insulin dosing or sugar administration. If Joe is low he must stay in the Health Office for 15 minutes until his blood sugar is re-checked to ensure it is in a safe range. The long and the short of the previously written is that he misses a ton of classroom time.
Let's look at the psycho-social-emotional aspect of this. He misses instruction. He has been made fun of by his peers for not knowing what to do on assignments due to his missing key directions. He misses socializing during snack time. He may arrive to the lunch room late and have to socially navigate his seating arrangement after his peers have settled into their spots. This has been his arrangement for Kindergarten, for First Grade, for Second Grade, and now...apparently...for Third Grade too.
I discussed my concerns with the Principal and the School Nurse. I stated we can continue with the current arrangement as there is only 9 weeks of school left. I did impart this message upon them: I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He was ready for more independence. I wanted to nurture this. I wanted to foster it. I wanted to facilitate a learning environment that wasn't dictated by his diabetes care. My hope is that in the future the psycho-social-emotional aspect of a student's care is considered. Joe is oh,oh so much more than "diabetes".
Joe is an intelligent, independent child. He has an excellent grasp of his diabetes care and I was hoping to foster his growth and development by stream-lining his care in the school this year. I am not unhappy with the school. I feel that Joe is safe there. I feel he is cared for: the blood sugars are checked, the boluses for snack and lunch and highs are given, the lows are treated. I guess I was just hoping for a bit more.
Joe's day-in-the-life managing Type 1 in School.