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.