The appeal of the transplant option, to me anyway (Jaime), was that it was something to *DO* instead of just waiting. I was against it in the beginning and then was grateful when it got to be a closer option because it was an ACTION. Now I feel good that I know definitively whether or not it's really an option for us. It makes things more simple in some ways.
It feels like we've stepped out of the race and now can really surrender to what is supposed to happen and make space for miracles, whatever they look like. I now know that I don't need to save my 5 weeks of unpaid leave for a transplant possibility. I can start to use some now, after I talk to my boss, to be present for my son who may be dying or may be healing. Either way, I need to be there to help him as he begins to go down the fork in the road he will be on.
This whole experience has been the most intense "be in the moment" practice. Last night through this afternoon, I was in such deep despair that the room felt wobbly. Tonight I am filled with a little glow of hope that something is shifting- cosmically, in Simon's body, in our approach, something. Tonight something felt different and I am waiting to see what it is.
It's like I had to completely surrender to this experience and now I can let it flow instead of holding tightly to what I want. With the "action" option taken away, we now wait to see where Shimmy will take us instead of dragging him there.
Here he is tonight, feeling better than he has in a few days, with Auntie Alicia:
I (Laura) just came in from a brief moment of lying out in the back yard. Roxie came out and sat next to me knowing that this was time to be still and not necessarily time for the late night
wrestling that we've been fitting in to a very full day.
I lay looking up at the stars remembering that this is all so much bigger than just myself.
Arms up I let it be known that I surrender.
I just give it up.
I will do my best to ride this wave of love, and support, and pain, and unknowing.
I felt the night sky heard me and took my surrender in to her vastness.
Tonight I feel lighter than I have in a long time.
Tomorrow we will see.
Some one wrote to us:
"wow! what a powerful little soul. Look at all the good and loving intentions he's drawing from others. The undeniable power of sisterhood in the selfless giving of gifts. This generosity of spirit is the foundation for a better world. It seems to me that Simon is summoning the healing energy in everyone around him. His life, is already a wonderful example of love."
I love that last line. I love Jaime so much, I love Simon, I love our family. So much love.