Precious boys

Reuben's seizure disorder is so unpredictable. A week and a half ago he ended the longest seizure-free stretch he's had in over three years, ending at 19.5 days without any seizures. Since then they've been kind of hit or miss - nothing really big, but a tonic/clonic here and a smattering of partial seizures there. Today he had a partial seizure that lasted for 20 minutes before we chose to administer his rescue meds (which essentially slow his whole system down enough that the brain can't rev up enough to seize). The partial was ebbing and flowing, impacting more or less of him as it cycled from just a mild off look in his eyes, to moments of full tonic-clonic seizing and the whole range in between.

I was holding him through this on the couch in the living room, with his Blue Blanket (Ba-Boo) and his Bible close at hand. After about 10 minutes in there Krassimir made his way over (belly crawling on the floor), picked up Reuben's second Ba-Boo which was laying on the floor near us, lifted it up in his hand and held it out toward me and Reuben.

That made me cry. I still don't know enough to truly know how much capacity Krassimir has to understand about the world around him. But he seemed to really know that Reuben was not well, and had put together that Reuben finds comfort in his Ba-Boo, and was trying to bring that comfort to his brother. The smile on his face while doing it was so sweet.

Photos in the middle of those situations don't happen, but here's Reu all knocked out afterwards, sleeping off his meds with his cat, his Bible, and two little blue blankets.

That moment with Krassi fills me with awe. This child was essentially thrown away, counted as worthless soon after his birth because he was premature and had hemorrhaging in his brain. Those caring for him at that time decided he would never amount to anything, and proceeded to take steps that would ensure he never would. I marvel at this simple act from my oldest son, and I cringe as I re-read the original medical papers we received about him which state his condition as, "severe mental and physical retardation, caused by the intracranial hemorrhage in the early neonatal period (prematurity) and the formation of cerebral palsy." There's no arguing the severe mental and physical retardation, but the cause is where it stings. I am firmly convinced that the cause is that this fragile little boy was never given the opportunity to grow. This very broken, severely handicapped, and multiply disabled little child is now becoming a young man who is learning to reach out to those around him and do what he can to ease the hurts of others.

Krassimir's never going to achieve great things in the areas that this world measures success in, but it's not an accident that over the past school year he came home with an "Empathy" award! Ever since coming home, he's been very aware of other's emotional state - crying, even sobbing when someone else is crying, and also learning rather quickly that Reuben screeching or crying wasn't as big of a deal as the other kids crying because it's a more normal part of Reuben's every day way of being.

What we saw out of Krassi today is a glimmer of growing maturity - instead of just becoming upset about someone else's distress, he made a plan and took deliberate action to try to do something to make a difference for his brother.

Wow.