Day 297

It was a month ago today that we went to the Emergency Room and Benji was later admitted to the hospital. It was a month ago that the endless rounds of testing began with an X-Ray, two ultrasounds and an MRI that had my little boy scared out of his mind. It would be three days before his fever spiked and his rash began. It would be seven days before his skin and mucous membranes were burning from the inside out, and we’d finally have a name for what he was going through.

I learned on Friday night that I still have work to do in processing this experience. When we were at Southside for movie night, I saw many mothers I hadn’t seen during the month we were away. Two of them in particular who follow Benji’s progress lent me their ears and asked about his stay in the hospital. I didn’t like the sound of my voice when I was speaking. I thought I’d been doing a pretty decent job returning to gratitude from anger. But Friday night, I heard bitterness in my words. I sounded ugly and negative. I wanted to stop listening to myself.

This was an important discovery, especially on the even of our first weekend at home. It was a gratitude check, really. There will still be recovery for Benji in the days to come, both physically and emotionally; but in many ways, tomorrow will be the beginning of his new normal. He’ll put on a Southside uniform in the morning. He understands completely that there is no pressure to stay all day, but he is so excited to go to school and be with his friends. He’ll pause on Tuesday as we head up to All Children’s to begin long term maintenance, but he’ll return Wednesday, and Thursday, and every other school day he’s able to until his next appointment. On Friday, we plan to go to baseball practice. If his body is ready, on Saturday, we are open to the possibility of him playing in his first game since he was diagnosed. And on Saturday night, like every other kid in Sarasota, he’ll go trick-or-treating.

When I look at the past month through the lens of what Benjamin has overcome, and at the season of lesser intensity we are entering, I can find my gratitude again. Michael and I will have the opportunity to use our anger as fuel toward constructive change at the hospital. That is where it belongs. For now, I can inhale deeply the breath of life in this house. There was much laughter around our table tonight. Our family and kids’ friends came over for a low country boil, per Benjamin’s request. They made a gingerbread house and ate sweet things. I have spraypaint on my fingers from constructing Halloween costumes. There are two lunchboxes on the kitchen counter waiting to be filled.

There have been moments that make nightmares in these last thirty days, but they are in our rearview mirror now. Now, I look around us, and ahead of us, and I can see beautiful things.

3 thoughts on “Day 297

  1. “It is important to try to figure out the true origin of one’s anger because anger based on distorted thinking often will simply vanish into thin air as the thinking is adjusted, but anger stuck in the nervous system due to trauma is an important doorway into healing from trauma. One needs to be released; the other needs to be embraced.

    Anger that is associated with trauma is an indication of melting or thawing. It is a positive sign that the energy trapped during the traumatic experience is trying to find a way to be expressed, ultimately resolving itself. It is also a positive sign that one’s sense of self that was damaged during the trauma is growing back.”

    http://www.new-synapse.com/aps/www/benjaminthebrave_981/public/?p=19
    _____________________________
    tell it where you are safe, protect yourself from further traumatization
    _____________________________
    Eight Criteria For Telling Your Story

    Be Ready. Make sure you feel certain this is the right time in your recovery to do this.

    Be Resourced. Be at a place where you have learned some skills to handle getting triggered, or be with a therapist who can lead you through finding your inner resources.
    Have absolute, embodied certainty of safety. Decide on what is a safe context to do this.

    Make sure you feel internally safe in the chosen context. Make sure you have already built inside yourself, in your body, a way to monitor and defend your own safety. Have the ability to speak with any and all parts of yourself that do not feel safe first in order to help them feel safe, and only then proceed. Have the ability to stop everything the minute you sense you feel unsafe.

    Make sure you are focused on your own needs. If the context is safe enough, you can be self-centered and listen to what exactly it is YOU need out of this. If something is repressed within your system (energy, emotion, action, vocalization), you should have the safety and freedom to express it. Make sure you are not doing this for anyone else. Nobody needs to know your story for any reason. (Of course this is different if you are involved in legal proceedings which is a whole different topic on how to tell your story when you’re being forced to.)

    Totally understand the experience of titration inside your body. Make sure you have had the internal experience of titration enough to know when you have gone too far. Figure out how to tell if this activity of telling your story will help integration of the past event, and make certain that is what you are doing – integrating. Know how to avoid getting triggered or getting caught up in the drama for drama’s sake.

    Trust your body. Work with your body. The idea of slow integration respects the integrity of the way the body has decided to store the traumatic memories and respects the body’s reasons for doing so. The idea is to trust the body and brain to be on your side. There is no reason to “bio-hack” one’s own physiology. There is no hurry.

    Have an “OK” level of brain organization. Make sure your brain has reached a level of organization so that it won’t just go into chaos and dissociate if you talk about what happened. You will know this because it’s like you aren’t drowning anymore when you reach this level of organization. Instead you are able to think clearly and rationally. There is a distinct shift. But because for many years you can go up and down, just make sure you have shifted into mental organization and use of the higher, rational mind for most of the time for at least a six month period, I would say. (I’m not there yet, I go up one week and down the next, but SE therapy is helping)

    Find your creativity. And – If you aren’t mentally organized enough yet to literally talk to someone about your trauma story, Creative Expression, such as journaling, creative writing, poetry, music, film making, art and dance (done in a safe environment or context, one that you truly feel OK with) also makes it safe to tell your story (and is incredibly therapeutic).”

    http://www.new-synapse.com/aps/www/benjaminthebrave_981/public/?p=1137

  2. So glad you can come back to school and be with us where you belong. You are one strong little boy Benji! Good luck in your baseball game and have a great time trick-or-treating.

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