Deciding not to go the transplantation route and talking more with the doctors about considering palliative care feels liberating in some way, tonight at least. It feels like we now have a little more leeway in deciding what we want to happen with him. It's like the pressure is off somehow and is making space for other possibilities. Our focus isn't on "go, go, go! Get better quickly because the clock is ticking".
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.
Thank you
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 nightwrestling 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.
Thank you
4 comments:
I want to share that I support the difficult decisions you are making, and I am completely and utterly awed at how present you both are for Simon, in the most amazing ways. You are among the strongest, most devoted mamas I have ever met in my life. The love you offer to each other is also beyond words for me. Simon is lucky to have you, and yes, he so far has been a great blessing to many people, offering them great lessons in love and bravery. The other night he inspired me to break through my lifelong hesitation/shyness/fear around making big requests in public. I asked a DJ to end his music early so that I could ask all the dancers to dance and pray and send healing love to Simon. The best thing was that I felt absolutely sure of my priorities in the moment...I had no qualms about breaking protocol or being a pain for the schedule, for a routine. There are far more important things in life. Thank you for inspiring me to do things beyond my own nature, Simon, Laura and Jaime.
I still have no words, but am in awe of all three of you. I can't imagine being faced with your situation, but am sending you all the strength & karma the universe can muster.
It was lovely to be with Shimmy for a good chunk of his "relatively great day." Love you all.
Isn't it amazing how one little person can bring so much to the table of life?
In what has been the longest month of your lives you have stepped out and shared your triumphs and your pain.
Simon is a special little man. He has brought so many people together regardless of how we know him. We have cheered his milestones, cried over his set backs and smiled everyday because of him.
After reading the stories of the past few days, I think of the expression "you can't change what you can't control". It's a hard statement but when you can let go and accept it ~ it's empowering.
As you said, you don't know where this road will lead. Please know that there are a lot of us walking with you each step of the way.
With love and hugs,
Carol, Pat and Katie
(Z and Cecelia, too!)
My eyes are flooding and my heart is full. Your mindfulness and consideration of each other as partners and parents is a loving gift to eveyone around you. As much as you are receiving you are sharing through your actions, including this blog. Every decision that you two make together and individually is the right one. Sending you my love.
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