November and all its cracked up to be

John. Oh what can I say about John. He's currently apparently not sick. Woohoo!

However, he's not 'better' either. He keeps spiking fevers and there continues to be miscommunication between doctors and nurses and caregivers - oh my! Theoretically, should he show signs of congestion again and he's in the right hospital, the pulmonologist (lung specialist) that he's supposed to see is going to rush in and save the day.

If only.

However, everyone is fairly well aware finally that hey, maybe this isn't freaking normal even if he has 'Down Syndrome'. There are days, when I really get frustrated with my brother, usually after he's pulled my hair and left claw marks on my chest but that's nothing compared to these doctors who don't respect that he is loving, living, beautiful person and treat him like an afterthought. That attitude is going to hasten his demise and while most people don't see my temper, its fairly pronounced when you threaten someone I love.

So the last ER visit turned out to be a false alarm but if protocols had been followed, the extra special wonder doctor would have been called and could at least have evaluated John. It hasn't been long enough for the pneumonia scars to heal but he could get a sort of baseline (and also understand why I stay in the hospital with him since he's difficult.) I get tired of explaining to nurse after nurse after doctor after doctor that "He's 18 months old living in a 31 year old body, if you want to poke and prod him, he'll be fine but if you try to put an O2 monitor on him or O2 in his nose/face, he'll fight."

I'm scared because this antibiotic-sick-antibiotic-sick-stronger antibiotic-sick sequence just can't go on forever. People have suggested g-tubes, thinking he's silently aspirating. Imagine a man-child who LOVES to eat, not being able to. I don't even know if they could keep a g-tube in. They can't keep a CPaP on him unles his meds have him drugged out.

And physically holding him down for treatments isn't fun for him or for those who have to do it. And the worst part is, very few people get it. Even I didn't for awhile. You lull yourself into wondering why is this all happening. He's mentally, physically and behaviorally sick - how much value does his life have?

But I grew up with him. I remember the joy, I still feel the enduring, unconditional love, I see the smile when I sing "a Bicycle built for two'. He is in there and when I mean he, I mean whatever was meant when someone said the meek shall inherit the earth. I'm as untrusting of most things written down thousands of years ago with double and triple meanings. But I see my brother, the weakest of us all, and my family is pretty messed up. He has something about him that glows. Not all the time. He drives me crazy some days. But when I reach him, for those moments, I believe in something. I remember the race we're in only matters sometimes. We all suffer in our own ways. Maybe this is John's final journey but I won't let him face it without a fight.

He is my brother, my baby brother and there are answers yet to be found.