A presenter at the conference I was attending mentioned repeatedly how her family supported her efforts. At first, I was ok, I even smiled or laughed like everyone else as she spoke of how her children "helped" by bringing her "coffee", the brown substance of which she could not actually identify. Then I started thinking of my son, and how he would call me "Dr. Mom" or to--differentiate from the myriad of medical professionals who helped or didn't help the body that he hated--"Dr. PhD Mom". But then I found myself counting her references to her children. I heard myself sort of counting down. And then she recounted how they stood up at her graduation when her name was called and I remembered that I had already started--more than a year in advance--working on my argument to have him sit on the floor rather than way up high where people who use wheelchairs usually have to sit, which is fine, as long as the reason that you use a wheelchair in the first place does not also affect your vision, as it does for many people who have cerebral palsy. Then my vision of my ceremony cracked and shards flew everywhere and then I flew out of the room, trying unsuccessfully to hold back my wails as I remembered again that he won't be there for my ceremony. And he would have been so proud. He used to tell people, "My mother is getting her PhD in special education to change things for kids like me." He would also ask me what I planned to do after my PhD, but more on that later. (Because he also asked what I would do after he was gone, and I kept telling him nothing because he wasn't going anywhere, he could stay with me always...more on that later.) Thankfully, there were friends there who knew what was happening, had even watched for it to happen, and they were there to just be there while I let go, then pulled it back in. But there were also people who had no idea why I was suddenly such a mess. So I blog so that people will know, and hopefully understand.
That same day, various spoken word artists opened my broken heart, operated on it, and gave me medicines to take at home. I left out mended it for a reason. Because that's just not possible. The Wryte One started messing with me by lamenting, "I wish I could press pause on life." Exactly. That's what Sekai needed. If we could have paused life, that would have given us the time to unpack all his hurts, shake them loose, sift them, bury some, release others, and just plain light others on fire. But as much as I would do anything, anything, anything for my baby, I couldn't stop the earth from spinning or time from passing. Then Komplex stirred the pot by commanding that we "dream or die," noting that "we the different, we never walk regular" (which actually made me smile because I think Sekai would have liked that comment as a different way to look at his inability to ambulate and would have appreciated different-> peculiar->peculiar people->). And then I thought I heard my son speak from Komplex's mouth: "Since I can still love you from the sky, goodbye." Breath. Take a breath. Am I crying? Ok, good, don't cry. This is good information; more than that, this is fuel, for me, for my walk. And I begin my walk again without fear because, as 13 of Nazareth put it, "How you believe in God scared of creation that live in submission to God's will?" and "...the same letters used to spell scared are used to spell sacred and...you can't be both. Well, technically you could, but it wouldn't be conducive to growth...." Sekai was both. Point and example. I cannot even get into what he says about prophets, at least not yet. But I am uplifted by the reminder that "stability within the motion of life is God's will." Hmm. Am I stable, what with all this crying and breaking? But then I hear in my spirit that the ultimate stability is in not taking my hand back from the Lord, so yes, ok, consider me stable. Words, spoken or written, can broadcast the thoughts of the heart. So I blog so that people will know, and also speak up.
"The Truman Show" has been on cable for the past two days, and the first night, I could not watch it. Truman's life is manufactured, and his whole life is manipulated by the corporation who took legal possession of him for the purpose of creating a show and making money. Truman learns that his life is not really what he thinks it is, that his family and friends are not who he thinks they are, but rather are paid to be in his life. In the end {spoiler alert} he decides to escape the bubble, and there is a scene where he bangs his arms and head against the wall blocking him from the real world, his real life. Sigh. Truman. Sekai. Who else? So I blog so that people will know, and so that people who know will tell me so that I will know.
The henna on my ankle is fading, so I've stopped looking at it. But my memories of him have not faded, nor has the pain of his absence. So I blog so that people will know, and we can all make sure his story does not fade.
No comments:
Post a Comment