Sunday, September 7, 2008

Day 37

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Today has been a hard day. Simon seemed like he felt pretty good for most of the day, but his respiration have been in the 70's and often into the 80's and 90's when he's super active or upset. He was very fussy this late afternoon and it was scary. It took over 30 minutes for his Motrin to kick in and for him to fall asleep. It feels like we're slowly creeping back to the way things were the night we came in.

I want to feel hopeful that he will recover, but I'm moving more towards being hopeful that whatever time he has left is loving, peaceful, joyous, tender, and filled with all the people who love him.

We have a new nurse tonight who we've known for the whole time but haven't ever had as our nurse. She's treating us a bit with kid gloves, bending rules, etc and it really feels like he's dying. I think he may be but how do I really know? This is the most surreal experience. Every day is so different, every hour is so different. I am struggling so much to balance hope with reality and realistic expectations. I want to believe in miracles, but I'm afraid the time for a miracle may have passed. I hope I'm wrong.

Laura and I had a conversation with Simon today. We talked with him about how much we love him and want him to stay and all the things we want to do with him and all the people that love him here. We also talked about it really being okay for him to go if he is done. We told him that we would help him either way and that we will always love him, no matter what the outcome.

I know everyone is sending different energy and thoughts and prayers. Those of you who want to keep on sending the "fight it, you can do this" energy, keep on. Those of you who want to send more "you can go if it's time" energy, do your thing. If you have "I send you no preference, I'll just sit with you in spirit" bring it. He needs a spinning vortex of love to help him get where he needs to go and no one knows where that is so let's give him some of everything.


molly said...

My are somehow bearing this with so much grace and courage, and with the generosity to share your story with us. I think of you three every day, and wish that I could be there to support you in a more tangible way. We are sending all of our love and hope to you now. Molly, Mosie, and Johnny

annie kelleher said...

sending you healing energy.. in whatever form that takes...

stephanie said...

Dear Laura, Jaime & Simon: Even though we have not had the honor of meeting beautiful Simon please know he and you are constantly in our thoughts and prayers. We have placed Simon's name on the "Mi Shebeirach" list at Congregation Sha'ar Zahav in San Francisco. At Shabbat services yesterday during the prayer for healing I heard no fewer than 12 people mention Simon's name. Be strong........ With love and hope, Stephanie, Ellen, Avidan & Chava Novogrodsky=Godt.

Anonymous said...

jaime, laura and simon,
(this is megan, your day shift nurse!)
i feel as if a lifetime of changes have happened since i last talked with the three of you on friday. i know that i have only had the pleasure of knowing the three of you for a little over a month, but i will always be inspired and awed by the love that you share with each other and the world around you. i can only hope that simon is smiling and comfortable with his two mothers. i will be thinking of the three of you over the next week. please know that all of my good thoughts are being sent your way right now.

karen said...

dear dear laura and jamie,
your instincts have guided simon through hardship no one should have to bear, let along one so young. it would be only human to doubt yourselves, but i so wish the most for you that you do remeain steadfast that you are doing what is right for you all. i know the spirit in simon that i have seen and been in awe of must shine a thousand times brighter for you and so i do not doubt that you instinctively know what to do fir him and for you both.

that being said, i know in my heart you are experiencing the absolute worst case scenario that the human condition has to offer, and you are 100% right in the choices you have made because you are his mothers, and no one would or could doubt that above all people in this world or the next, you know best. the world makes us second guess, but your hearts are guiding you and there is no rule book but that of your own maternal compassion.

i echo the sentiments of so many- would that i could shoulder some of your pain and hardship. i wish you more strength, though from where - who knows. this just sucks, more than anything i could ever imagine. and there is simon, a perfect beacon of joy. there is no logic, no justice, no reason. there is only love and your perfect trinity, and i wish you calm and peace in this time.

Jen said...

We've never met the three of you, but have been following your journey for the last month. We are MHC Alums, partners, and mothers to our own little boy. We wish we were closer and could do more, but our thoughts and wishes for strength and peace are with you all.
-Jen & Melissa & Nathan

Anonymous said...

Laura, Jaime & Simon,
Thank you for sharing your journey with all of us. I check in every morning to see how you all are doing and to hold you in my prayers for a few moments. Your love for one another and especially for little Simon shines through in every post, and it is a real testament to the depth of your spirits that you consistently see the gifts in such a difficult situation. It's no surprise that so much love is coming your way and that Simon is surrounded by such wonderful care and kindness. No matter what happens from here - you are giving him everything he needs to live an entire life enveloped in love - and what a gift that is for anyone to receive. Sending you my love,
Jen Crow

jeannie stone said...

Laura, Jaime, Simon,
You are all in our thoughts and prayers every day. We've been watching Simon's progress and rooting for him. You two are amazing, with this much love, miracles do happen!

I hope this Janis Ian song will bring a smile to you both...

Lots of love
Jeannie & Skate

PS: Jeremiah had an awesome Outward Bound experience