This is a bit of a indulgent venting for me, but I'm putting it out there anyway. I am three of four children in my birth family. Tony was 4 of 4. He died on February 14, 2001. I rarely speak of him, there's not much to say among my family and friends. We share memories and feelings and try not to wallow too long in the dark spots. Life has to go on, right? Bruises, pain, growing up with love, anger, secrets, and just plain old differences in personalities, viewpoints and approaches to life. Tony was the awesome weird kid who I had to put up with before I knew much of anything, but I knew he was different and special. And really not equipped to deal with this life that was his path.
Me, I'm strong and capable. Adaptable and cooperative. I can enlist others into working with me, give and take. I can finesse others into doing my bidding, and let others think they have finessed me. Tony never got the whole cooperative, part of a bigger picture thing. He was the baby and a prince, maybe. Or just a self absorbed dick. Quirky, as a baby he wrapped his two middle fingers in his shirt and sucked them. All of his shirts got big holes in the middle of them. He was cute as could be and I adored him as a baby.
Kids 1 and 2 were 4 and 5 years older. So we had the "bigs" and the "smalls". Tony and I were The Smalls, almost exactly two years apart, and we had to bathe together, go to bed at the same time, be babysat together, have bedtime readings together. We had lots of fun laughing while Mom read Winnie the Pooh and other books. Sometimes Tony would laugh so hard he would throw up. We had the mumps together and cried and whimpered and held each other in the front sun porch area, where I think we were quarantined . There were a lot of bonding moments as young kids together. I was always sweet to him, although I adored my older brother and wanted to be part of his world. It was way more interesting and exciting, he was doing things and having adventures with friends and enemies. Tony was odd and was my mother's favorite little darling, youngest, last child. They had some kind of thing and that was ok. It left me free to roam, and roam and run I did. Life was full of fun, adventure and promise.
Years later, Tony was befriending the weirdest of the weird kids, which also included some overlooked waycool kids. Older by years, and younger kids. The oddballs, forgotten, misunderstood, criminals, neglected, artists. I never knew what menagerie would be in the kitchen when I got home from school. I would usually stop and say hello, and take in the crazy quilt. We grew very far apart, and at some point he started blaming me for everything and anything that went wrong in his life. Somehow it was my fault that he had to cut his hair?! Smart kid flunking school and getting parental wrath. I tried to show him how pulling an acceptable grade could earn him freedom and joy, a minimal amount of schoolwork for an awesome payoff. Stubborn fuck he was, and continued to taunt and torment the parents into antagonism. I never understood that dynamic.
One of 4, oldest sister, and he adored each other always. Tony joined and started bands that would make Zappa smile. He built guitars from scratch. We grew farther apart. We got in a physical fight in the butler's pantry when I was home on break from college! This is how much we could push each other's buttons. He was living in Boulder, doing music, having a life, and he was diagnosed with MS. He was in his 30's, unattached and quirkier than ever.
At my instigation and insistence, we brought him back home, he moved in with me for a few months and we re-bonded. There was a lot of blaming and yelling, his brain was riddled with plaques. A doctor we brought him to told us his brain was like a piece of charcoal rattling around in his skull. He was quirkier and angrier than ever. His hair was still long and I would lovingly wash it and braid it. I cooked good food for him, and he would yell at me, and I would snap back. My kids, dog, little league, husband, everything pissed him off. Until it didn't. We found our love and bond again. He got healthier and happier living with me. He petted the dog, interacted with his nephews and even went out with some old friends a few times.
In the end, just a few months later, he was in a nursing home and basically starved to death. His MS was relentless and aggressive. He couldn't swallow. He didn't know us. The hospitals would not help him. We had to make the decision to let him go. My older brother and I had to decide whether to allow oxygen or water as he slipped away. What is compassionate, what will hasten the inevitable with the least pain? There was no hospice care. It was our first close death and it was difficult. The Medicare basic nursing home offered a hospice doctor and staff, we waited. They never called. I went home. Alone, sad, at the mercy of the system and confused. Valentine's Day.
I called my sister, his closest sibling, and insisted she go see him. My brother and I had been there for about 20 hours the day before and were waiting for the hospice doctor or other personnel to come and see him and update us. That never happened. Sister went to see him in the morning and he died then, as if waiting for her. Valentine's Day, February 14th, 2001. I went to work that morning like it was any day. I faced reality, told a few people what was going on and said ok when I was told to go home, mostly because I realized how odd I would have seemed to be if I would have stayed. It was all so emotionless.
We gave him a good send off. I spoke about him getting lost on Maxwell Street, and the family frantically searching for him only to find him sitting on a Blues Band drummer's lap. Awesome, quirky, so not right ever for this time, this family, this life. Godspeed Tony. He and I were at peace and mended our relationship, but the baby should not be the first to be buried. Both parents had to bury him. I never saw them so broken. And we were broken too.
I was a member of my local Fire Department. In May I witnessed a newbie, during his recruitment class' first drill with the whole department, fall off the fully extended ladder. His brains splattered everywhere. There was a near miss as he fell and almost took out a couple of beloved friends. Trauma, pain, guilt, horror followed. Then September 2001 came. In November I went to New York to stand Honor Guard for some of the fallen.