Monday, July 16, 2012

The Skin I'm In

It's nice skin. I think it is, at least. It's always been one of my favorite part of me. It's pretty soft in places, a nice color and parts of it definitely tell the story of specific times in my life.

Two very small cat scratch scars will always remind me of Charlie (the chicken cat who took a flying leap off my chest from were he was sleeping when someone came through the front door.) A funny shaped burn scar on the inside of my right knee from when I was learning about fire making/tending/cooking at camp one summer. Five scars; three on my hand and two just below my ribs from my motorcycle accident in 1996. The very mild dent and scar on my forehead from when I was showing off being a stunt man when I was 9. "Look Ma, I can walk into this parking meter and not hurt myself."- Seriously though I had done it several times before and not gotten hurt.

It's my skin.  No one else's. I take it with me whereever I go. It changes color when I'm out in the sun. It sloughs off at certain times and heals itself. Supposedly, on a seven year cycle, every single cell of our outer epidermis will regenerate. We are forever in our skin but it's forever changing.

This weekend my skin and I took off for the weekend. We had an amazing 46 hours with our dear friend Anna. It was a much needed break from a rough month prior, and more than anything, a time to connect with a dear friend, sans child and tube feedings, medications, laundry, dinosaurs, and blended anything. It would include an overnight at a swanky timeshare (thanks to her in-laws), a concert, meals out (where we might even have to wait in line!), lots of adult conversation, uninterrupted sleep, and maybe even some reading time with a book where nothing rhymed or had pages with pictures on it.

It was lovely. I even made it a good 26 hours into our weekend without crying.

And then I realized that my skin and I still carried all that was inside of me.

We were sitting at the Dolores Street Cafe, the two of us, along with three other dear friends. Some fine acoustic folk music was playing and for some reason my eyes drifted from the musicians up front to the crowded room where an array of San Franciscans (and others) were tightly packed, eating salads, sandwiches, and various cold and hot beverages. There were short-haired ladies, long-haired men, more than a few that I couldn't tell, and generations from before and after me. It was a nice crowd, I thought. People were making eye contact and smiling, moving chairs so that others could squeeze theirs in. Sliding over on benches to get just one more hiny placed. It was a nice crowd.

And then I felt it. It was like a wave of loneliness pressing down on my chest.
No one knows.
No one knows here (except for my friends with me), that I have a child at home who is tube-fed.
No one knows that I administer medications to him three times a day.
No one knows that he has a surgically-placed port sticking out of his belly that I turn several times a day so that his ever-leaking (however minuscule) stomach juices don't build up and cause irritation around his skin.
No one knows that he is delayed in interactive speech, gross motor skills, cognition, and has low muscle tone.
No one knows about the appointments, fear of fevers, echocardiograms, blood draws, and lifelong diagnosis that he lives with; that I live with.
And on and on.

I felt so alone and feeling alone in a room packed full of people can sometimes make you feel even more along.

I know that every single one of those people in that room was leading some kind of extraordinary life. We all do at some time. Everyone has a story, and up until 4 years ago, I knew that my story  was mostly in line with your typical life story. It had ups and downs and long stretches of 'that's just how it is'. I had life altering moments, great love, heartbreak, play, work, and some travel.

Almost exactly 4 years ago my life became a-typical. Everyday was significantly different from the majority of people that I knew and shared space with. Every moment became worth more because the full spectrum of life experience was held in it. The spectrum that included new life and possible death. My life became about so much more than me and not just in that way that a new mother gets to learn that lesson, but in the new parent of a child with a lifelong critical illness with special needs kind of way.

Sitting in that room with all those people. I was still me. I was still me in my own skin.
But, I was without my anchor. I was without Simon, who has brought me to this new life. A life that I relish. A life that I could not and would not choose to change, unless it meant a cure for the future without changing everything that we have learned from and gained from, that we have gone through already.

This kind of time away from Simon has happened four times in four years. I get chunks of time here and there but an overnight or even two nights is more like a once a year occurrence (which is amazing!!). It's without Simon, without Jaime, and away from our home. It's meant to really let me recharge and reconnect with myself (and sometimes a friend) in a way that I can't when I get a 2 hour chunk of time "off".

And I did it. I didn't think about what time it was and was he getting his Lasix on time or was he getting tired now or did he get fed close enough to waking that we could maximize on hunger as got closer to the next feed.

Still, in that moment at the cafe, I felt it. I felt what I carry with me all the time. I felt the difference that is my life in relation to the lives that (probably) most other folk in that cafe are living. It's different in a different way. Then Ty (from GirlyMan) sang about being "not quite lost, not quite found. Just somewhere different now" and I cried.

I cried because I felt so alone. I cried because my life is so different.
I cried because Simon is alive.
I cried because I love him so much.
I cried because I was away from him.
I cried because it was good to be away.
I cried because it's a great song.
I cried because I have amazing friends.
I just cried.

It was good.
And then I was back. Back in my skin that I am mostly really comfortable in. Back in my skin that has its scars, and tattoos, and changes to nice nut-brown in the sun. I still felt my extra-ordinaryness. I still felt different. But it was ok. I felt more in line with the bigger thinking about how we all have our stories. We all have our extraordinary moments.

It was a feeling more about connectedness that isolation. It even felt sweet.

Like the guys in San Quentin used to say "it's all good."
It's fucking hard, but it's all good.

Oh yeah, and i went to yoga 4 times last week! I went today and I'm going tomorrow too! Fucking proud of myself. Goooo Laura!

A visit from Mr. Clay always inspires Love

Summer Chillaxin'

 Bounce House Fun

How he fell asleep the other night

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Jen said...

Love you Fitch.

Tessa Derfner said...

You never ever cease to amaze me, my friend.