I have debated writing this blog, but often I’ve shied from saying things I want to say in favor of keeping the status quo and making everyone happy. I’ve really spent much of my life trying to please others so much that I often lose sight of what I really want.
What I really want to do is talk about my sister. It’s been over a month since my sister passed away. That scares me that time has still passed and she isn’t here.
I don’t even know what I want to really say about this event. I don’t know if I want to post about the medical specifics that led to my family’s decision to let her pass as naturally as possible given her condition at the time, or about the feelings left behind when she did finally leave this world. I don’t even know if I can adequately say what I’m feeling, or have felt, since my world completely changed starting September 23rd. I guess what I will say is what I know in my heart, and if it’s coming out in complete disorder, I beg the forgiveness of those reading.
I don’t even remember how old I was when I learned Jaime was different. I was 14 months younger, and practically developed alongside her. I don’t remember a time where I just thought, “Wow, she’s different.” I suppose that is the awesome thing about growing up with Jaime. My older brothers were of an age to notice differences; I knew nothing different. I vaguely remember things of my early childhood. Some of it, I’m sure, I’ve just lost to the ravages of time. Others, I think, got muddled into parts I’d rather not remember. A lot of it, however, was probably the mundane parts of life you hardly remember, and in honesty, that was probably where a lot of my early childhood memories with Jaime lived.
For those that don’t know, my sister was mentally and physically handicapped. She struggled through most of her life with health troubles, enduring many major surgeries that my parents had to be absent in my childhood to be with her for. I rarely remember this absence, lest people think I’m complaining. It was an assumption of normality, I think, with my memory. It was just how life was. But, damn, was she a spitfire. She was fun, and loved to laugh, play, and just enjoy things. She wanted to be in the middle of it all, even if she didn’t fully comprehend the game we were all playing. She wanted to be a part of life, and that was enough.
I suppose the first time I learned Jaime was different was when I noticed strangers’ reactions to her. Jaime could be loud, did often drool, and sometimes knew no personal boundaries. I admit I sometimes noticed this more than I wished I could have ignored it. If not for others’ reactions, I’d probably never had a moment of saying, “something’s weird.” I think I was 12 or so when I first noticed this, and my hyper-awareness of such things led to my own discomfort with myself. I began to anticipate, even if it was an unfair assumption, what others thought.
But, as I grew, I realized that some people just never have encountered someone that could challenge their status quo, and it was more an ignorance than a willful way of being rude that controlled their actions. I struggled to teach people a new way to think, a new way to regard the word, “retarded” and to realize how their casual misapplication of the term could hurt. The best part of growing up was being able to take everything I ever felt as a kid and through reflection, begin to dissect and understand it. Even better, to accept it.
There were so many things I learned in the days between September 23rd and October 4th. I learned that, despite what limitations she had been born and grown with, my sister had a full life, with many friends and people who adored her. I learned that the infectious sense of humor she always showed my family blossomed with those that worked and lived with her. I learned of her unfailing ability to wake every morning with an optimism I envy, and went to bed every night wanting to be surrounded by love and companionship. I learned of resilience. I always knew my sister was strong. No, Jaime was beyond strong. But, I learned of the strength inside of myself. I learned the strength of love and forgiveness. How much hope can hold you up, how far you can fall when it’s taken away, the strength to fight when it’s futile and the ability to understand loss in the most profound and oddly beautiful of ways.
I thought I had been strong when she finally passed. I learned after the fact that I hadn’t been. The awareness of how you remember things, and the knowledge that truth is not just your viewpoint but the shared recollection of an event strikes me as so profound, and I took from that a sincere wish to be even stronger than I could before. This is not from embarrassment or shame. I just want to know the truth. The truth of how it was, and live life in deference to that fact.
At the services, I feel like my brother delivered an amazing eulogy that summarized what Jaime was to so many, but as in all human things, it lacked too. Not out of lack of effort, feeling, or want, but because some things, and some people are just undefinable. Sometimes, you just cannot really say it all. Sometimes, words just fail.
This year was a hard one. I lost many people I had grown close with, grown up with, and loved far more than I could ever express. I realize that as an adult, this is a consequence of life that I will have to accept as more normal the older I get. But, with the loss of Jaime, I don’t feel like an adult or that I’m getting older. I just feel like that 3-4 year old that played along side her on merry-go-rounds, and wrestled with her with my grandfather. Despite all the things that have changed in our lives since that point, that is where I want my heart and love to reside. I want it to sit in the time where Jaime’s differences were not a defining characteristic and the only thing that matter was that she was my sister.
She was my sister. And, that is gone now.