For traumatized folks who have considered suicide

A few thoughts on the film For Colored Girls, as viewed through a Sekai Perspective. After all, that is the lens I use now.

Initial thought (excerpted from my Facebook post), on Saturday morning, after crying all the way home and going to bed early on Friday night:
At one point, my heart was beating so hard... I should have reread the choreopoem. I had completely forgotten "a nite with beau willie brown". Incredible movie. Critics say we don't need another movie about trauma in the Black community: No. We need less trauma in the Black community, in all communities.

Another thought (also excerpted from my Facebook post, and additional thoughts based on friends' comments, and my responses to their comments):
I'm not sure why this is bothering me. I don't even know Tyler Perry. Anyway. Tyler Perry did not write and did not direct Precious. He produced (i.e., funded) it. Sapphire wrote (in 1996, might I add) the book Push: A Novel which serves as the basis for the film. Tyler Perry also did not write For Colored Girls. He did direct the film. (I think he did a good job, all in all, but that is not what this piece is about). Ntozake Shange wrote the choreopoem for colored girls who have considered suicide/when the rainbow is enuf (copyright date: 1975. 1975!). If art imitates life, and Black women created these pieces, why are folks ticked with Perry, but not about these experiences?

I cannot find the actual quote that I was looking for, but this situation causes me to remember when folks were all over Tupac Shakur for the lyrics in some of his songs. His response was to say that he was writing about what he saw, what he lived ("I'm a reflection of the community" is the closest quote that I can find), and to question why folks were more concerned about the fact that he said it than the fact that he lived it. That is what I have been thinking about since seeing For Colored Girls and reading all these negative reviews and critiques, especially the ones that specifically denounce Tyler Perry.

From what I have heard about his interview on Oprah (still on my DVR, I have not cued it up yet), Tyler Perry believes that we still need to think and talk about these issues because they have not been resolved. Sure, he has his own issues that he is still working to resolve (who doesn't?), but he is not the only one, and his issues are akin to (or exactly the same as) those of so many, too many. At that point, to me, he becomes a voice speaking out about the problem; but for some reason, he is being vilified by so many as if he is the problem. Back to my Saturday morning comment: We need less trauma. That is the problem. We need less trauma. Less abuse and less neglect (of others and self). Less pain, individually, collectively, communally. How do we get there?

If one is targeting a situation or behavior, it seems to me, one needs to be able to define and identify that situation or behavior, the triggers, and the consequences. Abuse and neglect can beget trauma. Poor self-image can beget faulty thinking, poor decision-making, and maladaptive coping skills, which can beget abuse, neglect, and trauma. Mental illness can beget abuse, neglect, and trauma. Poverty, lack of access to quality education, medical care, and social supports can beget abuse, neglect, and trauma. Injustice can beget abuse, neglect, and trauma. Each of these can also beget each of these: abuse and neglect can beget abuse and neglect, and so on, and so on. These issues, among others, are highlighted in the film For Colored Girls, as they are in the choreopoem upon which the book is based. For some reason, though, I have not seen a single review mention any of these issues, or even the fact that the movie is (as is the choreopoem) about the abuse, neglect, and traumatization of a particular segment of humanity. If we cannot talk about it, how will we ever address it, any of it? If we continue to focus our attention on red herrings or avert our gaze out of...what, embarrassment?..how will we ever address it, any of it?

With the publicity around the then-upcoming release of the film, people again turned to Shange for her perspective. In this video, she speaks about her experiences living with bipolar disorder and suicidal thoughts/ideations/tendencies (the latter are my words, not hers; she labels the bipolar disorder and mentions suicide attempts):



In this video, we hear Shange talk about how people told her not to seek assistance from a psychiatrist because a specialist might tell her that she was "crazy". We hear her talk about issues with medications, and determining the efficacy of medications. We hear her discuss her attempts (quoted here with descriptions of her attempts excerpted: "...then I _________.... I tried that a couple of times, and I never got the hang of it. On television, if you ____________ you died. I was really devastated! I thought, why’d you come now? I was almost gone. Another time, I tried _________, but I messed that up, too.... I guess it was not my time to go, not my time to go." Was it Sekai's time to go? Or did he just "get the hang of it"?

How many people are still trying to get the hang of it? Why? What happened to them? What needs were not met? What conditions were not adequately treated? What can we do to help them, to help us?

Why is this not the conversation being sparked by this film?

Over it?

“I am tired, and I want to go to heaven,” he said.

“I am not ready for you to leave,” she begged. “I just got you back. We just got you back.”

“I am tired, and I want to go to heaven,” he said.

“Please, tell me. How does the story end?” she asked him.

“The people who loved him and worked so hard for him have to get over it and move on...the little boy is not there. He goes to heaven,” he replied.

And to heaven he went. And the people who loved him did not get over it, but they did move on: on in to the fields, on up the mountains, on into the valleys, carrying his story with them wherever they went.

That is how I concluded the obituary that was included in Sekai's memorial DVD. I added that last part, perhaps in hope that it would be true. After visiting the cemetery today and seeing that the marker that contains his "family name" has been removed, I suddenly felt the need to reach out for help to...whom? I suddenly--painfully--recalled the many professionals who had been involved in his case who said things like "I will make sure there is justice for Sekai", only to never be heard from again. I suddenly--painfully--remembered the conversation excerpted above. Remembering how Sekai had an uncanny way of knowing, seeing, telling things, I suddenly--painfully--wondered if he was right about this, too, and whether they are all over it, over him.

Open letter to Bravo (and NBC Universal Cable Entertainment)

If Kim Zolciak questioned, "Do I look like a ___ (insert any slur other than the r-word)?" on the White Hot episode, would it not have been bleeped? Individuals who are perceived as having or do have intellectual disabilities, learning disabilities, or other disabilities are not less-than-human beings for others to mock in order to feel better about themselves. Making fun of others in order to feel better about oneself is bullying. If we are concerned about vulnerable teens who are bullied, and if we want to decrease the numbers of young people who feel that their only choice is a desperate choice, then we must commit to changing the way that we speak to and about each other. Are not youth with disabilities who take(give) their own lives after being mocked and bullied equally as concerning as suicides among other vulnerable teens? Please, stop the r-word!

Spread the word to end the word
http://www.r-word.org/

Bullying among children and youth with disabilities http://www.stopbullyingnow.hrsa.gov/HHS_PSA/pdfs/SBN_Tip_24.pdf

Bullying among children and youth with Disabilities and Special Needs http://www.education.com/reference/article/Ref_Bullying_Among/

Depression: The hidden problem among students with exceptionalities http://www.cec.sped.org/AM/Template.cfm?Section=Home&CONTENTID=1595&TEMPLATE=/CM/ContentDisplay.cfm

17

If his adolescent development continued in the same way, I imagine that his mustache would have fully come in by now. If the eating issues resolved, I imagine that he would probably be more bulky than sinewy given how plump he was as a baby, and given the physical exercises that we had begun. If we identified a doctor that could successfully address the issues with his right leg, I imagine that he would clearly stand taller than me by now.

If he were alive, Sekai would be 17 years old today.

I can only imagine how he would look. I have a hard time imagining who he would be as a person, because by the time of his passing, he was a much different person from who he was before the reality of his experiences, trauma response, and depression took over his very being. But since this is me imagining...I would like to imagine that his sarcastic nature and sassy wit would have increased and been more widely recognized as his ability to display his intelligence would have increased and been more widely recognized once his educational opportunities improved; that his charisma and interpersonal skills would have grown exponentially once his pain had been addressed; that his compassion and humor would have begun to shine once he felt that these qualities of his--that all of his qualities, and indeed his very existence--were appreciated by others.

I can only imagine how beautiful his face would be with the light of 17 candles shining upon it. Happy birthday, Sekai! Happy birthday, my darling, darling boy.

"A life in the community for everyone"

That is SAMHSA's vision, and the tagline is oft repeated on their site and on their deliverables. "A life in the community for everyone." Sekai wanted a life in the community. He wanted a life at home with his family. The SAMHSA vision is specifically about individuals who have or who are at risk for mental health or substance abuse disorders, but the thought could appropriately be applied to children with other disabilities and children in foster care. Tomorrow, SAMHSA is holding an Open House to publicly discuss their Strategic Initiatives. Happy birthday, my darling boy.

Esme

I have not been posting as often as I would like. I am still writing, just not posting. I think somewhere along the line I went from posting my thoughts as they occurred to me, even on my handheld, to waiting until I could get to a computer and sit and think and edit. The problem with that of course is that I have some five or six--or more--posts in various stages of completion that need to be posted. So I am going to try to just write. Anyway...

I am starting a new job. Yay! I am quite excited about the job and very grateful, especially with the current state of employment and economic troubles. Though I am excited, I am also a bit nervous. I have yet to meet my boss or see where I will be working, and little things like that can be unnerving to me. It isn't that I'm concerned about the work environment--I've spoken to my boss on the phone and emailed with her, and she is very nice. It is just that the unknown can be unnerving. At least to me. And I start the job next week. So here is where it gets a little more challenging: I start work on Monday; Sekai's birthday is Friday. I had planned to more or less shut down. But that was before I had a job. (I have a job. A really good job. Did I mention that? Yay!)

I was speaking with my mother this morning about whether to contact my boss in advance to ensure that I can take off on Friday (the hiring/contracting agent has said that she doesn't think that I will be a problem), and just talking about my questions. She asked, I answered, I asked, she answered, and then she said we could talk more later, and then she left for work. Minutes later, she came back in and said, "It's ok to be nervous. A lot of people are nervous about starting a new job, and that's ok. It's ok to be nervous about this." She didn't add, "but you'll be fine", or "just calm down", or any of those platitudes that can feel like salt in a wound to someone who is working through something. Suddenly, I just felt so much better. I felt heard. I felt validated. Isn't that what we all want?

For obvious reasons, I started to think about the times that Sekai had expressed his emotions, and the times that I wish now I had responded differently. I know, I know, the coulda, woulda, shouldas can be dangerous territory; I try not to park in that neighborhood often. This time, though, I suddenly had a good memory, a reminder of a time when I was able to respond swiftly to Sekai's needs and meet them well.

Sekai used a powerchair for mobility. When we first moved into our new apartment, he did circles in his room. When I asked him why, he responded, "because I can". Indeed, in all of his 11 years away from our home, he had never been able to move himself in his own bedroom. His foster family didn't allow him to bring his manual chair beyond the threshold of their house, and the powerchair was always kept at school during the school year, and put in storage over the summer vacation. Sekai could access our entire home in his powerchair. At the time, though, we were dependent on the school to transport his powerchair to school. The physical therapist had someone pick up the chair, and he had to ride to school in his manual chair, and then be transferred once he arrived at school. This had been the arrangement at his foster home for years. Without transportation in place during those first early weeks, however, we would be unable to get his powerchair back home for the weekends. Sekai was vexed about being without his mobility, and spoke quite a bit about this, talking about having his freedom taken away again. That week, I spent hours online, searching for a ramp van. Previously, my mom, Sekai, and I had gone to dealers to look, but they are quite expensive, and working within the system to get the assistance Sekai was entitled to for covering the cost of the van would likely take a long, long time. (And yes, of course they reminded me that his foster family had never bought a ramp van, as if this was an indictment of me, or that I was somehow being frivolous by wanting to provide my son with his mobility and freedom. Sigh.) So I spent that week online. That Saturday, we went to visit a man who was selling his ramp van because he had been approved for an upgrade. The van showed some wear-and-tear, including the giant scrape on the side of the van that resulted when the handgears stopped working (the reason for getting the upgrade), but since I don't require adaptive equipment to drive, and the ramp worked just fine, the van was good for us. We agreed to buy it. That Monday, the seller and his friend delivered the van to us at our local service station. The service station did the inspection, and I then rushed to the motor vehicle administration office. We were on the road, with valid tags, that is, tags that were real, that said the van belonged to us. Like Sekai's feelings. They were real. They belonged to him. Like our feelings. They are real. They belong to us. How wonderful it was to be able to basically say to him, I recognize that your feelings are real, they belong to you, that they express a need, and I can commit to meeting that need.

I call my vehicle Big Red (I've had her since before Sekai came home), so it seemed fitting that the van should also have a color-based name. Big Green didn't really have a ring to it. So we called her Esme, short for Esmeralda. I said she was Sekai's van. Sekai corrected me, "No mom, she's our van." When I pointed out that I bought it for him, he still continued, "Esme belongs to both of us. We're a family." And he was right.



PS-Our dear friends own the van now, and they have renamed her, bestowing a name that is an amalgamation of my name and Sekai's.

Dear students

I am aware that at least two of my friends and colleagues use my blog in their university courses. One teaches special education, and the other teaches human development. I may use it in my course this semester as well. If you are a pre-professional, post-secondary student who is reading this blog, even if only because your professor has told you to do so, welcome to my world.

In the past, I actually began my introduction on the first day of class with the phrase welcome to my world. I explained to my Introduction to Special Education students that the field composed a large part of my professional life, but also my personal life. I would tell the students that one of my goddaughters and a few family friends have cerebral palsy, and that a number of my friends and family have other special needs. Then I would tell them about my son, Sekai, a child for whom excerpts of his life story could be used as anecdotes in teaching all but 3 of the 18 chapters in our textbook. When I last taught this class, in the spring of 2009, my students learned a great deal about special education through my eyes as Sekai's mother, and through what he would tell me to tell them. The quote on the header for this blog is what he told me to tell them when he could not come to do his guest lecture after all because he was in the hospital. This fall, I will be teaching this course for the first time since his passing. Now there is one more chapter, "Transition and Adulthood", that I will not be illustrating through a story from Sekai's life. OK, yes, it is true that he had a transition plan in his IEP, but the truth is that he had a transition plan of his own, and will never make it to adulthood. I am grateful to have a guest lecturer for that content this semester. To say that I take this subject matter seriously is an understatement, but I am sure that by now you get my point. Now, let me leave you with a few more points.

First, please keep in mind that Sekai was first and foremost a child, just like the children that you will provide with education, special education or related services, medical care, child welfare services, or any other care for that matter, are children first and foremost. Being young human beings is not the same as being miniature adults, and there is little if any true power in their position. The challenges that many of these children face due to situational vulnerabilities are challenges that have been created by others and put on them, not challenges that they have created to put on you. Disability, especially when viewed through the lens of social construction, can also be considered situational, but this is not to grant you or anyone the license to assign blame or prescribe guilt to parents whose children have disabilities. If at any point you find yourself blaming a child for the challenging behavior that the child is presenting at the moment, please be cognizant and attuned enough to recognize that not only does that child need help (e.g., with expressing feelings, needs, or concerns; coping with intense feelings, needs, or concerns), but you may also need help in order to gain or regain the appropriate perspective. If at any point you find yourself blaming a child's parents, please reread the sentence above, replacing the word child with the word parent, and keep in mind that though parents are (often) adults, we may also need help. I would also like to add something that invokes glass houses or miles and shoes, but I think you get my point so I will leave that alone for now.

Secondly, please keep in mind that Sekai was also a spirit, as are the children whom you will one day serve. This is not the same as saying that he had spirit--and oh he did, let me tell you!--but rather I say this to make the point that some of his wisdom was beyond his years, and therefore difficult for some to comprehend. Are you familiar with the term old soul? It is a cultural reference, often used in the southeastern region of the U.S., and amongst persons of the African Diaspora. The term is used to describe a person, usually a child, who seems to have wisdom beyond that which could typically be obtained by a person who has been on Earth for however many years that child has been alive. Without delving into theology, let me simply quote Pierre Teilhard de Chardin to more fully illuminate this second point: "We are not human beings having a spiritual experience; we are spiritual beings having a human experience." To play with the semantics a bit, Sekai also had a spirit--which is still not the same as saying he had spirit, which he did, abundantly--as do the children that you will teach, a spirit that can be broken if mishandled. Please be mindful, then, that what you say and do to and about the children that are put in your care has the potential to either build them up in positive ways, or break their spirits in ways that you may not even realize. These ways may seem beyond your scope of concern if that child, like Sekai did, looks back at how you continued to live your seemingly happy-go-lucky life while he ruminated in whatever hurtful space was created by a negative word or misplaced term, the lack of concern only serving to reify and reaffirm the negative feelings. Please be mindful that certain words and actions are to the spirit what sticks and stones are to the body.

Lastly, please recall that Sekai had great spirit! Read the light points of the birthday memories post, or about his appreciation for chicken nuggets and reality tv for a glimpse of just how fun and funny he could be, this dear boy whose name means full of laughter. The children whose lives you will touch also have great spirit! I punctuated that sentence with an exclamation point because I want you to be excited about the possibilities! Each one of these young people who are presented to you for your support, assistance, encouragement, or who otherwise present you with an opportunity to fulfill your mission here and to contribute to the beauty of life on Earth has a personality, likes, dislikes, talents, gifts, hopes, and dreams. Each one of the children who are put in your path has the ability to introduce you to reasons to smile, and yes, perhaps reason to cry, but trust me when I say that no matter how physically, cognitively, or emotionally involved that child appears to be, no matter how distant or unconcerned that adolescent appears to be, that child, like Sekai, wants you to smile when you think of them, and when you interact with them. Each one, like Sekai, wants to know that you will remember them.

Have a wonderful semester. Be a wonderful student. Prepare to be a wonderful professional.

Feel free to post comments; in fact, please do post comments.

And remember Sekai.

Empty hand

I haven't posted in a while. Not that I haven't been writing. I have notes everywhere: in my phone, on the computer, on the backs of receipts, in various notebooks. I've been writing, or almost writing. Putting thoughts in words, but not refining. This I'm going to go ahead and write out, refined or not, just to get it out there.

Today is my birthday. Just like holidays are hard now, my birthday is very hard. I think my birthday is worse. When he came back, Sekai hated celebrating anybody's birthday. He said it reminded him that his birthday wasn't celebrated at the foster home when he was away.

I celebrated this weekend, and actually had a really good time. Then Monday, the tears came. The anger. The sadness. It wasn't until last night, well, this morning, a few minutes after midnight, when someone posted a birthday greeting to my Facebook page that it sort of clicked for me. It was officially my birthday. I had lived 13 months past my son in real time, and lived 22 years more in my life than he ever would in his life. And that hurt. Terribly.

This morning I was cheered up by the multitude of well-wishes through cards, Facebook messages, text messages, phone calls, and emails. My friends and family made a point to recognize me on this day, and the feeling was overwhelmingly warm. My mother even took the day off to be with me on my birthday. We planned to go to lunch. Then I suggested that we also try to see a movie. I had heard the new Karate Kid was supposed to be good.

[Spoiler alert] A few minutes into the film, I wanted to leave. The male child lead character in the movie is sad and fearful for much of the movie. This saddened me. He is beat up by other children, brutally beat up. This saddened me. The other children are encouraged to be brutal by their teacher, in what I could only process in my mind as child abuse: corrupting, embittering, taunting, even striking children for the purpose of making them fight each other. This saddened and angered me. Repeatedly, I wanted to leave the movie, but I didn't want to upset my mother who was doing all she could to make me happy on my birthday. And I wanted to see the movie turn around, to see the redemption. Before I could get to that place, the male lead character/positive male teacher is shown in a full on crisis of the heart. Before he even answered the question posed to him, I knew the answer. When he responded, "It is June 8", I almost screamed out loud. I wanted to leave. Right then. But I was afraid that if I stood up, the wails would also stand up, and that would be just too much for everyone. So I sat there. And waited for the redemption.

And for those of us who remember the original, or who have ever seen a "good versus evil" movie, we know the redemption comes in the end when the underdog triumphs. In Western culture, we seem to like stories of underdogs rising up and beating the meanies at their own games. My mind, though, kept going to Sekai. Sekai, who could out-talk and even out-whit his enemies, but could not physically escape them. I thought of the time a classmate yelled at him after the teacher moved Sekai in his wheelchair in front of the other student in line. The other student was physically imposing by grown man standards, and knowing he could not get away from him, Sekai began crying in the cafeteria, in front of everyone. When he came back home, Sekai was enrolled in a middle school in the new district; I was concerned, but he was happy, saying that he did not ever want to go to high school again. Sekai died the week before his second graduation from middle school, and I could not help but wonder if he had high school, among other things, on his mind.

Just as he could not escape the bully at school, or being promoted to high school, he also seemingly could not escape foster care, and the corrupted, embittered, taunting meanies and bullies there. Watching the teacher on the screen who taught his students to hurt others, I could not help but think of how we as parents put our trust into people and systems that are supposed to care for children, and how easily that trust can be broken. The students in the movie believed what their teacher was telling them, until they realized the losses they faced as a result. Sekai believed what his teachers, foster parents, social workers, judges, therapists, attorneys, and others were telling him, until he realized the losses he faced as a result. No kicks, blocks, or spins could help him. He didn't see himself as the underdog who would get redemption.

So he wanted to leave. Right then. And the wails stood up. And it was often just too much for everyone. And still I sit here. And wait for the redemption.



[PS-Karate is translated as "empty hand". Sigh.]
[PPS-I learned at a recent conference that bereavement, particularly loss of a child, forever changes one's perspective. I concur.]

One

I can still hear it. It has been one year (how has it been one whole year?!) and I can still hear it.
Doctor: "Time of death, 7:19. We should get the family in here."
Nurse: "That's his mother right there."
Doctor: "How long has she been there?"
Nurse: "She's been there the whole time."
Doctor, to nurse: "Oh, no."
Doctor, to me: "We tried..."
Me: "Please, just try again. Just, try. Please, please, please try again..."
Doctor: "We did...We tried everything..."

Rest in peace, sweet child of mine. I love you always, Sekai Ayinde Williams. Love you. Always.

Mother's Day musings

If receiving a child is a blessing, then is losing a child a curse? And to lose a child at his own hands?

I have purposely left the final edits of my dissertation for today. As I wrote in a previous post, completing my dissertation serves two purposes: 1) I am able to complete part of the task Sekai set for me; and, 2) I am provided with a much-needed distraction. In a conversation yesterday with someone who will be catching up on work today, I mentioned that I was going to ignore Mother's Day by working on my dissertation. She responded, "I can relate." I think I know what she meant, but I could not respond with what was running through my head. Can you relate? Isn't your son at university? Ignoring the day intentionally by scheduling work is not the same as having to forgo the day because of work. There were other thoughts, but I assured myself that she meant no harm, and probably was not even thinking about the situation in those terms. And why should she? It has occurred to me that bereavement is like race/ethnicity, gender, (dis)ability, and any of the life situations which lend themselves to alternative perspectives and critical theories in that way: if one does not have to think about it, then, generally, one does not.

Mother's Day of course presses the issue. I find myself not wanting to contact my friends who have children because I do not want to serve as that constant reminder that life, even a child's life, is entirely fragile, and that the the status of active motherhood (as in day-to-day parenting) can be fleeting. I am not spending it with my mother because years ago I decided that it was too hard for me to celebrate her without thinking of my own situation. Some may consider that selfish. I am sorry. It is the only way that I can think of to not make her feel bad and, yes, to not make myself feel worse. She is out of town today hearing President Obama deliver the commencement address at Hampton, and I am thrilled for her. She deserves a happy Mother's Day, even if I cannot provide her with one.

Only once have I had a Happy Mother's Day. As a mother, I mean. As a child, I would go all out with the homemade cards and breakfasts, and as a young adult, Mom and I would shop for her summer flowers on this second Sunday in May. As a mother, well, I have only once had that special warm and fuzzy feeling on this day. The first Mother's Day that Sekai was home, he was only 2 years old, and he was sick that day. Nobody called to wish me a happy Mother's Day, and the only card that I received was from myself. Not only was he not adopted at that point, he was not even officially placed in my home, so my guess is that most people simply did not think of me as a mother. The following year, Sekai was 3 years old, and had been home for almost a year. Sekai and I got dressed up, went to church with my mother, and the three of us went out for a brunch afterward. It was a lovely day. The following Mother's Day, I was fighting to get him back home. Every Mother's Day from that point forward, I have cried. Last year, he was back home, and still, I cried. By that point, Sekai had made it known that he intended to leave this earth, and he did everything he could to push me away in the hopes that that would stop me from trying to keep him alive. I went to brunch that morning with a foster/pre-adoptive mother who was introduced to me by the child psychologist who provided services to both of our sons. As we were leaving, she mentioned that Mother's Day was one of those holidays that she did not really acknowledge, and in so stating, made it clear to me what I was feeling was my feeling alone.

When I arrived back home, Sekai presented me with a homemade card that expressed his feelings towards me. Line after line after line extolled the positive aspects of my motherhood. And then he signed it with his legal name. By this point, his ability to catch me off guard, to cause me to feel the sudden, unexpected, and unrelenting pain that he had felt upon being snatched away from me by lying mouths and taunting hands as a toddler was ratcheted up to full throttle. I looked at him, and he was smiling. Then I said something about how he had hurt my feelings signing it that way. His face fell. His mentor from the therapy program explained that she had written it that way. I recalled that he had asked to sign a birthday card for a family member with his "family name" just a few weeks ago. In my mind now, I try to read the look that was on his face. Was it intentional? Or was he genuinely sad that he had hurt my feelings? Was he really trying to be kind and loving? Did she write his legal name without asking for his input? Did his face fall because she wrote it without asking for his input, thereby underscoring his point that because he had not been taught to read and write that he was at an incredible disadvantage? Had he meant to taunt me, but been surprised and then sorry at how much he had hurt me? Was his facial expression not indicative of anything other than grimaces and spasms secondary to his neurological condition?

This last query weighs on me. I have spent countless hours analyzing what did he mean when he said..., but what was he thinking when he made that face when... has a torturous nature of its own as I watch the faces of my goddaughter and another family friend, both of whom also have the diagnosis of cerebral palsy spastic quadriplegia, and I am reminded that facial grimacing can be one of the effects of this condition. Recently, I asked my goddaughter what she was thinking in a particular situation. We had been out at a restaurant having dinner with the family, and on our way out, she had to use her power wheelchair to navigate a walkway and ramp on which a number of people were standing. There was another young woman who was also using a wheelchair going down the ramp, and from her appearance, I am guessing that she may also have had the same condition. And then I saw my goddaughter make that face. The same one that I saw Sekai make often. I had an idea what she was thinking, but I didn't want to guess, and this was my opportunity to possibly gain some insight into what he may have been thinking, and also to be better able to understand what she was experiencing. So I asked her what she was thinking. She hmmm'd and ummmm'd, and then said she would tell me in a minute (once she got down the ramp). Her dad and brother laughed, and replied that we all knew what she was thinking. (Like Sekai, she has been referred to as, shall we say, sassy.) Once she was at the van, I asked her again. She made the face again. The young woman who was using the manual wheelchair was being lifted into that family's truck. I watched my goddaughter's eyes go over to them. She hmmmm'd again. I told her that I had an idea what she was thinking, but I wanted to be sure, and that I wanted to know because Sekai made the face so often and I wanted to be sure that I was not misinterpreting the spasms as actual facial expressions; I wanted to be sure I was interpreting it correctly. She sighed. Looked at the other family. Sighed. Made the face. Said "yeah", and drove into the van.

Sometimes, I hope that those faces are just spasms. My friend makes them, and I'm almost positive that they are just spasms, especially since I have seen him make them when we were all joking and laughing. Since that Mother's Day card was the last written sentiment that I have from my son, I hope that the facial expression was just a grimace. If he was crestfallen at my response, that means he actually was trying to show me love, without a dig at the end, and I missed it. I miss it now for sure.

Aspiration

On the first Saturday in May last year, instead of attending a celebration hosted by one of the academic groups to which I belong, a gathering I have attended each year since being affiliated with this group, I was bringing Sekai home from the hospital. He had been hospitalized for pneumonia. After days of waiting for the cultures to grow, the infectious disease doctors determined that the type of bacteria meant that the pneumonia was caused by an aspiration. When they told us this, Sekai simply smiled. The infectious disease specialist asked him why he was smiling, and he responded that he was pleased to know that he had successfully given himself an aspiration pneumonia, and how this was part of his plan. She asked more about this, and we shared with her the information that we had shared with numerous specialists: my son was working on an exit strategy. She asked if he had been seen by the hospital's pediatric psychiatrist, and we both informed her that Sekai had been under that psychiatrist's service when he was in the hospital just weeks before for pulling out his feeding tube.

Her response was something like this: Ok. Well, it would be good if he could be seen by a psychiatrist before we discharge him, but Dr. SoAndSo is our only pediatric psychiatrist, and he is on vacation in Rome for the next few weeks. But I will let him know about this when he returns.

I wonder if she really did let him know. We never heard from him. I wonder if any of those doctors know that the word aspiration appeared on my son's autopsy report just a few weeks later.

aspiration 1.) strong desire, longing, or aim; ambition... 2.) a goal or objective desired... 5.b.) the act of inhaling fluid or a foreign body into the bronchi and lungs, often after vomiting

Unexcused absence

Dear Teacher,
Please excuse Sekai from school on April 16, 2010. We understand that his absence may be marked as unexcused by the registrar, and, as he is very concerned that you will not approve of his absence, he has asked me to write a separate letter asking that you please excuse his absence. (That is, he wants me to ask you not to be upset with him when he returns to school on Monday. As you know, he is very sensitive about how others view him and his actions.)
Thank you,
Ms. Williams
Sekai's Mom

Dear Teacher,
Please excuse me from school on Friday. My mom is taking her Ph.D. I will call her Dr. Mom. I mean, Dr. Ph.D. Mom. So I am going to campus with her and will not come to school. I hope you are not mad at me. It isn't every day that my mom takes her Ph.D.
Signed,
Sekai Williams

Those are the letters that we were supposed to send to school today. We had discussed it for months. I wrote Teacher above because I do not know who Sekai's homeroom teacher would have been this school year. We didn't send the letters anyway. Sekai decided to be absent altogether...and his absence is not excused.

Contemptible, indeed!

Oh, Sekai would be so very happy to know about this! I am thrilled. Ok, holding them in contempt is step one...

From the organization Children's Rights: "Federal Court Holds DC Mayor Fenty in Contempt for Child Welfare Failings; District Must Fully Implement Reforms"

From the Washington Post D.C. Wire blog: "Judge rips Fenty on Child and Family Services leadership"

If he were here

I am in the middle of a tremendous project. Well, I would like to believe that I am past the middle, and near the end. I am working on my dissertation. As Sekai said, "My mother is going to get her PhD in special education and change things for kids like me." That's what I'm working on. I've been congratulated, commended, even had people marvel at how I am able to keep going, to keep dissertating. I don't think people understand that the dissertation is both a means to an end and a distraction for me. It gives me something to do that allows me to feel as if I am taking giant steps forward, steps toward making the difference that Sekai and I often discussed at length, the difference that will make the world a better place for children like him (e.g., children who have disabilities, children who have experienced trauma, children in foster care,etc.). It also gives me something to do that allows me to devote almost all of my mental energy toward thinking about this one thing. I am grateful for both of these aspects of this process.

However, there are times when I have been working, working, working, for hours on end, then I finish, prepare to leave my office or wherever I happen to be working, start heading home...and it comes (c)rushing back that he is not there. Or there are times when I have been working, working, working, for hours on end, and suddenly I think, "Where is Sekai!?" as if my mind has wandered and I have suddenly realized that I am late to pick him up or to call him...and it comes (c)rushing back that he is not here. Sometimes, I cannot help but think that I would not be getting this done if things were different--if he were here--and sometimes that is so deeply painful and upsetting that I almost don't even want to finish.

When these thoughts (c)rushed upon me today, I could not help but wonder what Sekai would say about my progress, if he were here. I imagined (remembered? I must have remembered, because I could almost hear his voice) him asking if I was finished, my explaining that I made progress, his asking if I had not yet "mastered" it (an IEP reference that unfortunately became part of his lexicon, and which he often used when conversations led to discussions of progress), and then his telling me "good job" (another hold over from a life spent in special education, I am sure), and that he would still call me "Dr. Mom. I mean, Dr. PhD Mom" when the time came. And I am sure that he would. If he were here.

I will always love you

Bootsie, I'm watching the BET Honors special. It is a show where people honor other people by singing to them, often by singing their own songs. I remember when we used to sing to each other, with each other. I didn't realize it at the time, but I guess it was a way of honoring each other, the joy we felt being together, the feelings we felt about having been apart and then being back together. Sometimes, I sing to you now. Can you hear me?

Just now, Jennifer Hudson sang to Whitney Houston. Jennifer Hudson was in "Dreamgirls". Remember when we watched part of that at the hotel on your birthday, waiting for the guests to arrive for your birthday slumber party? You always did like musicals. I can't think of how to make you know Whitney, but I'm pretty sure you knew her songs. She sang, "I will always love you." And I thought of you.

(Earlier today, I submitted a policy fellowship application. I completed the application in honor of you, and I pray that I am selected, so I can tell more people about you, and create big changes for the children who are still here. As I was writing my essays, as I was uploading my application, as I clicked the button to submit, I thought of you.)

I was going to post the lyrics here, but the verses are actually quite sad, and a part of me weeps at the thought that that is how you may have felt at times. I assure you, you were not in my way; loving you was my way. Some of the memories are bittersweet indeed, but I search my mind for the happy memories, especially from when you were young, and I hope that you were able to think on them, too. You were what I needed, what I fought all those years for, but I know that you'd been made to feel unneeded while you were away, and I am so very sorry. (I included the word "unneeded" in one of my essays about my calling, which was handed to me by you. You were the first and only person I have ever heard use that word about a person, let alone about themselves.) I can't have all I've dreamed of now, because you're gone. So, I won't post the lyrics to the verses.

But here's the part I want you to know: And I will always love you.
I will always love you.
I will always love you.
I will always love you.
I will always love you.
I, I will always love you.
You, darling, I love you.
Ooh, I'll always, I'll always love you.

Still remembering

I just have not been writing a lot on the blog. A lot has been happening. A lot of feelings and thoughts that I should probably write down. Some I do write, some get away from me before I can record them. There are also a lot of posts that I've sketched out in my mind or in my journal and have not fully written and posted yet. But it isn't because I'm done remembering him. Not at all. Sekai, sweet potato, I think about you constantly, and I miss you so much.