Thursday, September 29, 2011

Mouth for Brains

My body is telling me that it isn’t capable of sleeping in this chair, so I talked to my body and told it that I AM going to sleep in this chair because bodies need to learn how to cooperate with their owners even though your body doesn’t cooperate with you no matter how much you talk to it. Is Daddy on his way home from work now? Isn’t it about time he gets himself home from work? Do you think Lizzie is holding Rowen and Rowen is nursing? Or is he fussing or sleeping or is Baba holding him? Do we have oranges?  Was that a hole puncher you were using this morning? What were you using it for? Why am I not sleeping? Am I too busy talking? Does my mouth have a mind of its own? If it did would its brain be in my tongue or my teeth? Or maybe a tendril came down from my brain and grew a second brain and it implanted in my cheek and is freaking my mouth out that’s why I can’t stop talking. Remember my penny from the other day? It was a nice penny, a forever penny, a lovely penny that doesn't wake up little girls like the fan. Can you turn off the fan? It keeps talking to me and waking me up. Like buses. Talking to me. Not waking me up. Buses don't wake me up. They do tell funny stories. Like my Moonbear. I wonder if Moonbear will visit me tonight. I'll have to be sleeping for that to happen. Maybe if I close my eyes my mouth will get the right idea. Goodnight, Mama."

"Goodnight, Alia."

Saturday, September 24, 2011

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Tuesday, September 20, 2011


(posting this a few days late - we were overrun by pirates on his actual birthday)

To my Moondragon on his sixth birthday,

There is no possible way you can be six years old. It couldn't have been that long ago that your older siblings were talking to the Moonbaby in my belly. Wasn’t it just last year you were my baby-just-born, all 10lbs 14oz slipping peacefully into the world surrounded by your family? It must have been just last month that you were my cuddly 3-year-old, never far from my side, always snuggled against me wherever I sat, no? You couldn’t possibly now be reading and writing and having long conversations with people about paleontology and space exploration and how you’re going to combine the two one day to explore ancient creatures on distant planets. Nor could you be sought after by 2 three-year-old girls for your wisdom and knowledge and wonderful storytelling abilities. Looking into your still-round face, I can see that infant, that 3-year-old , but there is a maturity there that wasn’t there before. Your smile warms my heart in just the same way it did when you smiled for the first time, and the peace that radiates from your eyes will forever ground and comfort me.

You have taught me much, my Moondragon. You are the fourth child, the third boy, but in so many ways the first. The first baby whose sex we did not find out until birth; the first to be born at home; the first peaceful, painless, relaxing labor and birth. The first to have a totally laid-back personality and not care much about doing what anyone else was doing - including not speaking much until age 3 (but boy have you made up for it since!).  Through these firsts, you taught m the absolute beauty of labor and birth. You taught me to relax, and breathe, and let things happen in their own time. You helped me to let go of (at least some of) that sense of urgency that seems to be ever-present in my thoughts. You taught me the joy in a word, in a touch, in a breath, in a color. You taught me to embrace the moments between thinking and acting, to slow down and listen –really listen- to a person or the wind or the crickets or the silence.

You have stepped into Six with confidence, ready for the challenges and opportunities you’re sure Six will present to you. I wish you well on your journey, and am overjoyed that I get to go along with you! 

Sunday, September 11, 2011

The Next Step

I’ve decided that we can be friends, perhaps even more. At first, I was wary of any close relationship – and certainly of a long-term relationship, but I think it’s time to make the commitment. As with any relationship, I don’t know if it will last, but I think the time is right to jump in with both feet. Well, not jump, exactly.  Jumping is too painful, leaves me too open to hurt and misery. Maybe “ease in” would be a better thing to do. We’ve already been around town together. You’ve gotten me through some rough patches in my life and are always there for me when I need you. I helped you when you were run-down and bought you things to help you be a better you. Our date the other night went well, even though it got off to a rocky start. It’s still early in our relationship and things are a bit awkward at the moment, but I’m sure they’ll improve with time. This really could work out and I’m starting to get a bit excited about it. I think I’m ready for the next step in our relationship. It’s time to give you a name – even if people think it’s silly for me to name my wheelchair.

Wednesday, September 7, 2011

A Walk with Grampy

Plink … plunk…clink…
Coins fall from the sky as we walk.
Running to pick them up, 
I glance over my shoulder at Grampy - 
Hands in pockets
Taking in the displays in the store windows.
Why doesn’t he notice the coins raining on us?
Dink … tink … Plink…
Picking up a dime and a nickel,
I quickly count the change in my hand
Hoping the “rain” will continue.
Hoping to have enough
For a small something
By the time we reach the toy store.
Whistle … Plink … tink…
Grampy’s grin wide
As we show him our bounty
His look confused when we ask
“where is it falling from?”
“The sky,
I would think!”
Clink … clink … plunk…
My sister runs ahead,
A quarter speeding toward the parking lot.
We’re almost there -
It’s just ahead!
Toys peer out the windows,
Inviting us in
To spend our newfound fortune.

Friday, September 2, 2011

Life Partner

I never would have guessed all those years ago that he would have such a huge impact on my life. In my wildest dreams, I in no way imagined that he’d still be with me now, and without a doubt will be with me until I die. There were long periods of time when he was very distant and I thought he might leave for good, but he stuck with me through it all. It seems no matter how hard I try, I can’t get rid of him.

And boy do I wish he’d just leave! What a pain he’s been all these years! Just imagine how I feel, living with someone so inconsiderate of my needs and my wants. He keeps me up at night – and I’m so sleepy during the day! He limits my movements – there are days when he doesn’t even let me leave the house.  The pain he inflicts on me has put me in a wheelchair several times.

The agony of knowing my life with him will never end and things could just get worse is overwhelming at times.  I fight not only with him, but with the depression and anxiety he causes.

Why do I let him do these things to me, you ask? Don’t you see I have no choice.  I’ve looked everywhere for a way out. I’ve even considered taking drugs to escape from him in a way, but those would be more harmful than the good they could do. I could move away from here to a better climate, but then I’d be away from my family and support system. My only hope is that he’ll leave of his own accord, which isn’t very likely.

I am doing things to help my situation, though. I’m getting myself as healthy as possible so I can fight back. I’m trying my best to think positively about my life every day and to find joy in what could be a life of misery and pain. I’m changing my perception of our relationship to one of respect and opportunity. I’m making positive choices in my life that will hopefully have an effect on his treatment of me.

I’m changing my perspective. Instead of pushing him away, I’m getting to know him better. I’m learning to enjoy the slower pace of life and the bliss that comes with taking the time to appreciate moments of beauty and wonder throughout my days as opposed to struggling against the limitations he has put upon me. I am finding balance rather than battling pain. I’m seeking peace with the uncertainty our relationship brings to my life.

I didn’t enter into my relationship with Psoriatic Arthritis (or Sporadic Artie, as my 3-year-old referred to “him” the other day) knowingly, but since he is in my life for good, I’m going to learn to live as well as I can with this unexpected life partner.