A manual of instruction in any branch of study - a text book.
A set of guidelines or rules - a protocol.
An "if this" then "do that" - a manual.
First off, I would like to thank all of you for your feedback on the Portuguese Pancreatic Princess Ponders Her Parenting. I feel the true value in blogging is not in my posts, but in your comments. They are honest and constructive. I did not take offense to any of them. I was struggling with many of the issues that some of you raised.
There are resources out there for us, for us as pancreating mothers and fathers. There are resources on carb counting. There are books on pumping. There are diabetes text books. There are thousands of pages documenting research, documenting complications.
There are no text books, no manuals, no protocols on how to really parent each situation that arises with type 1 in the periphery of everything. Each child is different, each parent is different, each family manages diabetes somewhat differently.
I came to this realization. Many of you may be mumbling a "no shit" as you read this one.
Here we go...
There is no text book instructing you on how to approach your child as you are piercing his flesh for the first time; for his first injection of insulin. How do you explain that this is the "first" of a lifetime? How do you look him in the eye without choking and tearing up? How do you look him in the eye with the “we can handle this buddy” look? There is no text book my friends ... to talk us through those times.
A pump site failure on an airplane … where is the “protocol” for that one listed? It isn’t. I wung it. A “You will not eat until insulin is in your body young man” was uttered tersely under my breath. A new site was begrudgingly allowed. It was "complicated"... it was done.
There is no “procedure” for holding down your low three year old son, to cram sugar in his mouth as he fights you. The force and strength of your actions cause you to question yourself time and time again. I have grown more callous with the physical care of Joe’s diabetes over the years. Sometimes you just have to be a "cowgirl" and "get ‘er done". Sad, that I have reached this point. Glad, I have reached this point. Self-preservation is a must...for us all.
Watching his body betray him time and time again when low blood sugars ensue, leaves me wondering when will type 1 in my child’s life ease it’s grip on my heart, on my emotions. There is no “feel-good” book on that. I watch. I wait. I endure. I wonder what it is like for Joe. How does it feel for your body to “fail” you? I don’t know. I hope someday he can explain it to me ... what it is like for him.
Play dates that never materialize and over nights that are not, where is the book on that? There isn’t one. I explain to my son time and time again that special care and training have to take place so that he can visit his friend’s homes without me in tow. I work on more cheat sheets. I educate friends to make these important activities in a young child’s life ... a reality for Joe.
Frequently, he is the last to arrive to the school cafeteria due to his diabetes care in the Health Office. Joe is left to socially manage his seating arrangement amongst friends that have already begun eating. My son must be strong, physically and emotionally. He is ... there is no book on that one.
Instructions during class, during sports, during games are missed, due to a blood sugar check, a bolus, a low treatment. My son is left to figure out the instructions or to ask about what he missed. Not a big deal you say? Try being a 3 or 4 or 5 or 6 or 7 year old child and muddling through that daily. It is a big deal ... once again, no "how to" to guide us.
A bolus is given. My son refuses to eat. He is upset due to a recent issue with a peer. Where is the manual on that one, I ask? There isn’t one. Threats come. Threats go. Listening seems to do the trick in the heat of the moment. Afterward, a discussion about the direness of the situation was had. My son and I problem solved. He understands that non-compliance is not an option. He understands that he could die from a low. However, I am not sure he gets the concept of "death". I am not sure I want him to.... he is but a child.
We experience, we act, we evaluate, we learn.
A day-in-the-life of parenting a child with type 1 diabetes... writing my own "dynamic protocol" as I learn from experience.