The Beginning of the End
The good news is that the Bee is going just great... at his pediatrician's vist this week he weighed 13 pounds and 6 ounces, measured 24.5 inches long and has a 16 inch head circumference. About 50th percentile all around (normal is good! We're happy with normal)! He's sleeping though the night (usually 8 - 12 hours), can roll from his belly to his back, can pick up toys with one hand, hold it with both hands and put it in his mouth.
He's smiling a lot (especially in the mornings), and I think I got to hear a bit of a laugh tonight. He's a darling boy, and I still wake up every morning grateful as all git out that he's here in our lives. Still stunned that I'm his mother. Still can't believe it, but so incredibly happy. He'll be 4 months old on Tuesday, August 2nd - our 5th year wedding anniversary. A better gift I cannot imagine.
The bad news is that the disease is progressing in my brother. I saw him this past weekend when we brought the Bee to my mother so she could see her only grandchild for the first time. We drove out to the brain injury rehab facility where my brother's staying until August 1st; after that he'll move back in with my mom and require 24/7 care.
Seeing him was a real shock. We saw him in February when he was in a nursing home. While he looked like hell on toast, he could talk, drink, smoke and laugh. This vist was quite a bit different. He couldn't effectively use his arms, and had little if any control over his hands. He said the word "yes" once, but I couldn't hear it standing 4 feet away from him. He has difficulty swallowing, so he's on pureed foods and all of his liquids must be thickened. He can nod his head yes or no, but the movements are very slow and difficult to discern. He can't really express emotion, although he did raise his eyebrows twice looking at the Bee. He had a pouch made from a section of his small intestines which now drains his urine in a bag (his constant severe urinary tract infections led to this option). He has difficulty focusing his eyes due to his decreasing muscle control. I think that pretty much covers it.
For a little back story, my brother and I fought like cats and dogs growing up. We were never close, but once I went away to college we became closer, which was nice. He called me up on a Saturday night in my 3rd year in a bit of a panic because he thought he might be gay, and I was touched that he trusted me enough to confide this dilema. (My solution? No need to panic, say yes to the cute guy who asked you out and figure out now if this is for you or not... don't have a midlife crisis 20 years from now because you're not sure. As it turned out, it wasn't for him, but at least he sorted out his feelings instead of repressing them).
When my parents split up in 1998, it really polarized my family. Initially I sided with my mother because she was so [manipulative] pursuasive. Eventually I met with my father with the attitude: "Oh yeah? What's your deal?!" When he spoke, a light bulb went off in my dim brain and I remembered that, oh, right... there are two sides to every story. My brother, who lived with my mother, had to listen to her cry and sob every day, chanting litanies of what a bastard my father was. He came to hate my dad, which is a shame, because my dad certainly loved him. My mother felt betrayed because I had a relationship with my father; if I were a good daughter, I'd take her side and cast my father to the winds. So it kind of became my mom and my brother on one side with me and my dad on the other.
My brother and I grew distant since that time, largely due to his harrassments. It went like this for about six years: 1. I'd say something to my mother. 2. She'd misinterpret it to be a personal attack on her. 3. She'd cry to my brother about how hurt she was. 4. My brother would call me, threatening "to make your life a living hell if I even thought you're was being a bitch to mom." 5. I'd clarify my statement to my brother. 6. I'd call my mom and clarify my statement to her, and tell her the next time she thinks that I've said something hurtful, to please call me so we could talk about it. (She would always promise to do this, but she never did).
This repeated over and over again for six years. And not once did I ever say something deliberately mean to my mother; I'm just not that kind of a person. So I stopped calling my brother, stopped answering the phone...opting to screen the calls because I never knew what kind of mood he'd be in.
My brother was always a pessimist, much like my mother. He loved to surf, and losing control of his legs was devestaing for him. He continued to surf on his knees for as long as he could. My dad suggested kyaking, as it's all upper body control, and he told my dad he'd rather die if he couldn't surf. The disease progressed to his waist and stayed there for several years. He was so angry it was really difficult to be around him. He said he felt that he should be able to treat anyone any way he wanted and they should just take it. He mouthed off to Mr. Right, and Mr. R just gave it right back to him. My brother respected that, so he stopped. My cousin L, however, was a softie and couldn't stand up to him so he would verbally lambast her everytime he saw her. He was pissed and let everyone know it. He maxed out his credit cards because he figured if he died, he wouldn't have to pay them back. He was working as an insurance adjuster and would deny claims because, as he said, "Life sucks, get used to it." He denied a claim once because he didn't like the attorney (someone we'd gone to elementary school with who had picked on him). He was collecting disability while he was working; once Social Security found out, they starting billing him for the $40,000. he had collected over the years he was working. Then he lost his job and couldn't get another one, due to a criminal record (broke into a police impound yard to steal a light off of one of the cars. When he was 26). He couldn't walk, so he figured, why bother? It angers me to see him now, so very limited, and to think of all that he could have done with his upper body while he had the time. But he never would have, because he just wasn't that kind of person.
I'm sure many of you will find me cold or insensitive. It's not every day you read of some traggedy happening to someone who's just plain onery. It's usually some nice guy or girl, siblings who have a loving or close relationship, someone who was talented or accomplished or had so much going for them. People who met him later in life remembered him as that "bald, skinny, obnoxious guy in the wheelchair." The person I grew up with was a bit of a fuck up, but he was funny, warm, generous, moody, but generally nice to be around. The person I grew up with died slowly, years ago and I never even got to go to the funeral.
I hope that my brother goes quickly, because I know he hates what's happening to him. That's the worst part - his body doesn't really work but his mind is still there. I'd love for my brother to be free. I think he's done enough time. I don't want for him to go on being trapped in his useless body.
What's funny is when I was little, I used to wish I was an only child (usually when my brother would break something of mine, or tease me or we'd have one of many daily fights). However, had it not been for my brother's very existence, we never would have known about this disease. I would have had children, never suspecting that I would have passed this horrendous disease on to them. We wouldn't know until my children started having problems. Perhaps that's why he chose this lifetime. Maybe it was a sacrifice, maybe for further advancement of his soul. I'd like to think so; I'd like to think there's some worthwhile reason for his miserable condition. Either way, when we parted, I told him "I love you, and I thank you for everything you've ever done. I owe you one. Big time." Then I kissed his cheek and left.