I guess that the title sums it up.
Benj turned four yesterday and he's no where near being a normal kid. Actually, I could care less about the whole normal part of it. I just want him to be a bit further from abnormal.
Unfortunately, this birthday weekend gave us ample opportunity to reflect on all the parts of this child that do not function well. From the life threatening low blood sugars to the extreme tummy pain at 3 AM, he seemed to run the full gammut of illness over the weekend.
The low point of the weekend: a hands on demonstration to teach our 10 year old son how to give his little brother glucagon through his insuflon.
The high point of our weekend: the fact that that 10 year old ROCKS at this sort of stuff and handles it like a pro.
I guess if we ever get stranded in a desert and a javelina gnaws off my arms then Will can keep Benji alive with injections. Right? See if I ever take these boys to Arizona again. They enjoyed that scenario WAYYYYY too much.
I'd love it if a doctor or two would come forward and proclaim that by age five they will have his bladder, pancreas, and gi tract fixed and fully functional.
Is it gonna happen?
No.
Will telling myself it isn't going to happen make 2/19/12 any less difficult?
Not a bit.
My only consolation: This child seriously does not know that there is anything WRONG with him. How the heck is he turning out so good?
Today I asked him while at Walmart what he wants to get his cousin for his birthday.
Benji: "Gavin wants a new backpack for his Na-Na" (aka the feeding pump's nickname, because we are weird enough to name all of this kid's tubes, holes, and equipment in a futile attempt to make them seem less abnormal).
Me: "Gavin doesn't have a Na-Na."
Benji: "That's too bad. Maybe his mom and dad should buy him a Na-Na like mine!" (insert cheesy grin because this is the BEST thought he's ever come up with, in his opinion)
Me: "How about a lego toy for his birthday?"
Benji: Looooonnnngggg drawn out sigh. "I guess sooooo."
So with the obvious fact that he isn't going to be fully functional anytime soon, I will turn my frustrations to something more productive in locating overalls for this boy on my day off tomorrow. I managed to track down one pair this week at a farm supply store in Vermillion. He has reached a point where too many holes plus a glucose sensor in his belly region is making finding pants with waist bands that don't create leaks nearly impossible. But overalls are hard to come by. We live in SD though people, aren't little boys suppossed to wear overalls when they help their daddies work on tractors? Especially little boys with more "leaks" than the average farm tractor?
