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