Why I am blogging

Today I will mail the bulk of the thank you notes to everyone who offered compassion and support when we laid Sekai to rest. It is not over, though, not even a little bit. EVERY day there is something that reminds me of him. In the last week or so, the reminders have been fast and furious. So I blog so that people will know.

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.

"I don't want to grow up..."

"...because I might die." That's what the woman on TLC's What Not to Wear just said. And my spirit screamed at the TV screen, "or you could not grow up and still die. You could die, and not grow up at all." Of course, she has grown up (they just said she is 46 years old), and I'm not really thinking of her dying. That's not the point. The point is... I don't know.

Maybe the point is she made it to 46, and my baby boy didn't make it to 16. I think I may have to turn the channel.

I know. I know. I cannot avoid forever statements that make me want to scream, or cry, or statements that just hurt. But for now, I am doing my very best to do just that very thing. Especially this weekend. Sunday is the 23rd. Two months since I last saw him his body. And on Monday, local children go back to school. A friend included me on a mailing asking whether, if given the choice, I would want to send my child to public schools or homeschool. Um. I would prefer that he simply be alive, and here with me.

But I know, I know. I cannot forever avoid statements that make me deeply, deeply sad. And that's how Sekai felt. Like there was too much that he could not avoid. At least, that's what I think he felt. Sometimes. I think that's why he said he didn't want to grow up. He was worried about what would happen to him if I died. ("My mom is older than she looks", he would say to people who questioned whether I was his sister.) He was worried about having to get a job, about what job he could possibly secure. He was worried about having to move out at age 18. I told him over and over that I fought too long and too hard to get him back in my life, in my home, in my arms for us to even have a conversation about him moving out just yet. I told him he was welcome where I was, wherever I was, always. I told him if he decided to get married, we would figure out the best home for all of us, so they could have their space as a couple...but if he really wanted 13 children, we might have to reconsider the living arrangements. He laughed at that. Then his face fell. Somewhere along the way, he had heard that he would have to leave home at 18. Either "because that's what people do", or, more likely, because that's what happens to children who grow up in foster care. So he didn't want to grow up at all.

Out into the shadow

I returned to work yesterday. As in, during the day. On a week day. When people were there. Lots and lots of people. I tried to avoid people who knew, especially people who had been at the funeral or whom I'd been in regular communication with because maybe they would provide an unexpected touchstone and the bricks would fall out of my carefully constructed wall, and I would, you know, like break down crying in the hallway. I also tried to avoid people who did not know that the son I had loved for 13 of his 15 years had passed away. I mean, really. There is no way to explain this without crumbling a little, or perhaps a lot.

Which is sort of what happened when I was asked, "So, are you have a great summer?" The ground shook a little bit, but I was able to dig my toes through my flip flops and into the Berber carpet to steady myself as I responded something along the lines of, "Um, no, I'm having a horrible summer." In my head, I followed up that statement with something about it being the worst summer ever, and tried to position myself in a way that would allow me to catch the bricks and put them back without being obvious about it. When I pulled myself out of my head, I could see her looking at me with a quizzical expression. Had she seen me applying mortar? I had no words to offer her, but thankfully, someone else who was present interjected, "Her boy passed away." At least I think that's what she said. The floor started shaking again at the phrase, "her boy." I wanted to thank her for recognizing that he is my boy. I wanted to ask her if she understood the fullness of his being my boy, and not *just* a foster child that I had just met months ago when we were matched (again) for adoption. But I didn't. I'm not sure if she saw me crumbling or felt me crumbling, but she quickly redirected the conversation and led me to her office for the business at hand. Phwew. That was close!

But then as we were trying to schedule my work, I heard myself explaining that yeah, planning for mid-October might not work because I'm probably going to shut down for the beginning of October because Sekai's birthday is October 8, so maybe, uhm...and the tears welled up in my eyes. The floor was still, but I was shaking, bricks were falling, and I just knew the tears were next. "Stop!" I told myself. Out loud. She was much kinder to me than I was to myself in that moment, and brought it all to a close by saying quite simply, "so we'll schedule it for the end of October". Ok, yes, let's do that. The meeting came to a close, and I walked out quite happy with where things stood, thinking, hmm, maybe I won't go out of my way to avoid people who understand after all. And then I started sobbing in the stairway...but I pulled it together by the time I got to the bottom of the stairs.

Last night, I read these words on p. 95 of "Eat, Pray, Love" by Elizabeth Gilbert: "But what if by choice or by reluctant necessity, you end up not participating in this comforting cycle of family and continuity?...You'll need to find another purpose...Virginia Woolf wrote, 'Across the broad continent of a woman's life falls the shadow of a sword.' On one side of that sword, she said, there lies convention and tradition and order, where 'all is correct.' But on the other side of that sword...'all is confusion.'" Ms. Gilbert was writing about choosing not to have children, and though I have not read Ms. Woolf's work that Gilbert references, I imagine Woolf was also speaking of that choice. I made the choice to be a parent, though. I made the choice to have a family. This, this here, this standing in the shadow? This was not my choice.

Return Assured

My packet came yesterday. If and when the need should arise, I am a member of Return Assured, so that if I am more than 100 miles from my legal residency at the time of my passing, they will assure that my body is returned to Ft. Lincoln Cemetery so that I may wait in rest with my son. I didn't realize that it is based on your legal residence, but rather understood that they would assure my body's return to Ft. Lincoln. Period. Hmm. So, I guess I will have to figure that out. But the point is, just in case everyone doesn't already know, I am to be laid to rest beside my sweet boy, when the time comes.

I know. Nobody wants to have to think about that kind of thing. Like I didn't want to have to call DDA and let them know that Sekai could not update his DDA waiting list information, nor is it necessary to keep him on the list at this point. That sounds all legal and technical, but really what I said, in between pushing down tears, was that he passed away, and um, can you please stop sending him mail. The woman quickly transferred me to someone else.

Where there is no vision, the people perish

"Where there is no vision, the people perish..." (Proverbs 29:18, KJV)

I'm familiar with this scripture, having studied it in my church years ago during a time of major transition within our church. Today, though, a friend (and clearly a spiritual sister sent by the Lord at the right time) ended a conversation in which we were talking about my son and her grandmother and structural sin by stating, "and people are perishing". I guess I understood this scripture to mean that it was the responsibility of the elders/leaders/heads/supervisors/directors to have a vision, or else they might not survive, they might not make it the whole way. (Think Moses not getting to go the Promised Land.) Today, though, my friend's response caught me off guard and clarified for me that though those in a position of power have the responsibility to maintain a vision, the danger is that the ones who usually suffer are those who are the most dependent on those who are in a position of power, those who are most vulnerable.

And, as I learned in another conversation today, way too often power protects power (either itself, or other like entities). Who, then, is protecting the vulnerable, especially when those in positions of power who are charged with protecting the vulnerable decline to do so?

Please take a look at the new links that I posted in the links columns today from Children's Rights, a watchdog organization that advocates on behalf of abused and neglected children throughout the U.S.