Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's situation was terminal. Clearly I did not take this picture, but this photo says an awful lot about that moment in time. Moments that weren't always pleasant! First if you look at Mattie, you will see he had cups covering his ears. Mattie was NOT trying to be cute. Mattie was simply on overload, he did not like all the sounds in the clinic, and was getting agitated. He was trying to block out everything, and typically under these circumstances I would remove Mattie to a quieter location. But that day the clinic was a zoo and there was NO place to remove him to. Second, as you may notice I had to flush Mattie's broviac lines, since the dosage from the pain pump was completed. Typically in a hospital setting, I was not able to administer medications of any kind to Mattie. Only hospital personnel are allowed to give out medications! However, this pain pump was supplied to us through our in-home pharmacy. Therefore, I was trained to use it and also had to maintain it. In essence, Peter and I were Mattie's in-home nurses and doctors! The third component in this picture was my blackberry. This red phone was literally right on the table with us. It was during Mattie's cancer battle that the phone became my fifth appendage. An appendage which I still carry with me today. When I look at this picture, it actually makes me sad. Sad because I can tell Mattie was uncomfortable and greatly unhappy, and yet I still had to drag him to clinic to be monitored. The irony of all of this is we spent most of our treatment time in the in-patient unit, and very little time in the clinic. You would think therefore that I would shy away from the in-patient unit because this is where most of our trauma and then loss took place. Yet, for me it is the exact opposite. I dislike entering the clinic, I find it depressing, and it brings back bad memories, memories like the time portrayed in this photo.
Quote of the day: I want everyone to know I had this beautiful gift and it's gone now. I want everyone I see to know that I am in great pain. It would be easier if you lost a leg - then people could see it and say, "Oh! you lost a leg, how terrible." But when you lose a child, lose an only child, you've lost a part of yourself. I lost a bigger part of myself than a leg, the me that was important to me, and no one sees it. ~ Enid
Today, I pulled out all the books on grief that were given to me since Mattie died. I assure you, I have quite a library. One of the books I perused through today is entitled, How to go on living when someone you love dies. The book devotes one chapter to the loss of a child. So naturally I went to that chapter first after skimming through the introduction. Within that chapter was this paragraph................................
"There are greater social problems in responding to the death of a child than to other deaths. This is because as a bereaved parent you represent the very worst fears of every parent. If it happened to your child, then it could happen to my child. As a result, bereaved parents are avoided more than most other mourners and are victims of social ostracism and unrealistic expectations. This is why so many report that they feel like social lepers. The strange and callous response you may get from others can lead to a lack of important social validation about your child's death and also about ongoing reality. Like individuals who participated in sensory deprivation experiments, you will have difficulties with judging reality if you do not get feedback from others in your environment. When this lack of support and validation is coupled with the inappropriate expectations that society has for bereavement in general and specifically for the loss of a child, you actually can be hurt by society - it not only doesn't help you but can also make the situation worse for you."
What struck me about this paragraph is it elaborates on the loss of social friendships and connections that I have been writing about for almost a week now. However, it honed in on the actual problem, which I wasn't able to truly articulate! Certainly the demise of a friendship is hard enough to face, but it is the meaning of this disconnection that is devastating. Because changes in friendships signify a loss in social validation, a disconnection from reality, and as a result it makes an already volatile and difficult situation much much worse for the bereaved parent. Or as the author points out, a bereaved parent can actually be hurt by society. I suspect, many bereaved parents learn to turn inward, not express their true emotions, and therefore not talk to others about their lost child on a regular basis. However, the irony is that in order to process grief and cope with the loss, one has to TALK about it. If you can't do this with your friends, then who are you going to do this with? I suspect many parents turn to professional help because their typical support system within their community can't or wont help.
The highlight of my day was meeting my friend Junko for lunch. Junko and I had a lovely time at one of my neighborhood favorites and chatted for hours. The funny part is typically I am aware of my surroundings, but today, time went by and I paid no attention to the crowds of people coming and going around us. The beauty of Junko is I do not need to advocate for my position on grief, the long-term issues associated with it, or how my life has and is changing. She just accepts this as a given and therefore, I do not have to work on explaining myself, my behavior or how I am feeling. So what that produces within me is a feeling of validation, acceptance, and doesn't put me on the defensive. She validates that I am entitled to feeling how I do and doesn't make me feel judged or measured by some sort of imaginary societal timeline for grief. I haven't felt good for days because of asthma, but today's outing was a special and unique treat. Junko was one of the first moms I met at Mattie's elementary school, and back in 2007, we instantly connected. Now that Mattie is gone, we still instantly connect, but more importantly trust each other. Another gift brought to me by Mattie.