Tuesday, May 25, 2010

And Then There Were Three

Michelle and family continue to slowly try to put the pieces of thier new life back together. Mama bear is heading back to California after many months at her daughter's side. It has been a long time since the Ways haven't had someone in their home to assist with keeping the house up and helping with Tater tot. It will be different. New challenges, but also a time for the family to reconnect on a new level. Tater tot will continue to be in daycare a few days a week to allow Michelle much needed rest time. Michelle is also using massage therapy, chiropractics, and acupuncture to help manage her pain. Unfortunately surgery hasn't been a cure-all, but Michelle knew this going in. It HAS provided hope for a better future. Michelle is only 3 months post-op, and her doctors suspect 1-2years for a better idea of what her recovery will look like. Her body continues to embrace her new little liver, her rejection scores are good.

I see Michelle getting stronger all the time and it's wonderful! Praying for her comfort and continuous healing.

We'll miss you Jer!


Friday, May 21, 2010

The End and Once Upon a Time all at once

The sun streams in through the window after a wash of spring downfall. The air is fresh with the new soil and flowers of hopeful gardeners. I've just pounded the last of the little fragile sprigs into the ground. Those little saplings are of kindred spirit with me. We are both going to hope our new life digs deep and solid roots that will sustain us. This will depend on a little bit of luck, careful care and a lot of love. Love is what sustained me through this then and now.

Speaking of love, my mama is returning home after being with us for 6 months. Jack arrived last night to drive her home in a few days.

My mama is gram-ma-ma to the Tot. So, for all of us, it is the end of an era, and a new beginning. I will miss hearing her happy voice that accompanies the Tot's giggles. I will miss our long chats and the friendship we share. Thank you mama for wrapping your heart and arms around my little guy when I couldn't be there. Thank you for standing by me and never holding your sacrifices over or against me. Thank you for your timeless and unconditional love. I love you with all my heart.

I hope you will set yourself free now. You have crawled through the trenches and faced death with me and welcomed our new life. This has been an endurance marathon and I have tagged you out. It's your turn to live your own life now. I have to run the rest of the race without you by my side so that I can find my own abilities again and discover new strength.

Thank you mama and Jack for putting your lives on hold to help save mine. I love you both.


Tuesday, May 4, 2010

Putting it all together again

Here I am again. It's dark, quiet and all the rooms are filled with the rise and fall of sleep. The veins in my thin hands shine up at me from the keyboard. The only light that fills the space is the glow of my monitor. I am here tonight because my mind is wakeful. I cannot seem to find the sweet spot of peace.

My lifetime so far has been freckled with joy, adventure, extremeties of trauma and privledge and everything in between. The constant has been my ability to fall in love with life despite it's circumstance. This February, for the first time, I fell out of love with life and it almost killed me.

In the week that followed my liver transplant; my body was in screaming amounts of pain, I couldn't eat, my skin smelled from the toxic drugs and I vomited through the incision that spread from my breast to my hips. I was dehydrated and my veins were drying up so they couldn't adminster IV. I would need another hose in my neck to mainline fluids. The overwhelm and the pain came out of my mouth as I told the surgeon I needed to give up. He yelled as I hung for life on the edge of my bed and gasped through the pain, "you fought harder then anyone ever has to get this surgery. We do not give these to everyone. You owe it to your donor, the people who never got one and to the people who will die waiting to FIGHT now."

I felt the sting of shame and knew, at the same time, I did not posess the strength to fight. I thought, "Can't he see we have reached the point of no return?" However, given the lack of options he was presenting, I assured him I would re-engage the fight.

As I listened to his footsteps fade down the ward, I assessed my energy to make good on my promise. It was negative 200 and falling fast. I felt failure was a guarantee. At least I should warn my family. I did. They did not take the news well. They called for help and it came in the form of an acupuncturist who was willing to come to the hospital. He took down the cards that lined the windowsill and removed all my pictures. He took everything off my side tables except my water. Everything was too big, life was too demanding, the love I felt for the people in my life was incompacitating. He told me to focus on the very small. Eventually we narrowed life down to my son's fingernail. He told me to focus on that to keep the ember of life alive within me. It was important to keep my spirit and mind alive while I could not control anything physically. A fingernail I truly loved was truly all I could handle.

For 3 days I visualized my baby boy's fingernail, then finger, then simply his beautiful hand. I repeated "mind over matter" under my gasping breath for 3 nights and 3 days. I yelled at myself as I vomitted up my lifesaving drugs. Finally, on the 3rd morning I believed myself and held down my medications. I announced my new resolve to my family and the doctors who were overjoyed. 2 hours later, my blood work returned and I learned that my liver was in rejection. Here was the true test. But the 3 days of hardwork had paid off and my resolve was solid.

My committment to life hasn't wavered since then but the experience still affects me now. I see pictures of myself before I was sick and there is a lightness to my smile, a joy of spirit. My spirit still suffers from the prolonged illness and the shock of surgery. I miss the girl I was. I hope she's just hiding and not truly and forever changed. I don't want to be so tired, so easily overwhelmed, so inept at the simple things. Life will always be a gift that was given to me- forever. My heartbeat is a gift. Every word I say may never have been. That very fact continues to humble me, amaze me and bring me to my knees. Is there a normal in my new reality?

With gratitude and always love,