Monday, May 26, 2014

Update from Nathan

It has been very difficult for me to sit down and write an update on how Sadie and I have been doing. I have started several times and just like the hundreds of Thank you cards that I have not written the inertia is getting hard to get past. It is still such a raw and painful place to go, but at the same time there is so much joy with Sadie and so much gratitude for all of the amazing outpouring of support and love and sympathy.
I think one of the first things I have to say is thank you. Thank you to everyone that was able to come to see Elisa off and share their love and pain. Thank you to everyone that texted me several times a day to make sure I am eating (I still don’t have much drive to eat but at least it is a habit again). Thank you so much to all of the amazingly generous donations to Sadie Education Fund (the trust for her has been set up and the money is safely secured and ear marked for education only!) Thank you for all of the beautiful cards and emails that I have gotten.
I have so much to be grateful for in this life, and you have all helped me see more of that for several years now.

I guess on to how we are. Mostly I am not sure what to do these days about a lot of things. For one, I am not sure if I should continue to post on the blog. On the one hand it feels sacred to me and that no one should touch it, and on the other I feel as though I have some strange responsibility to keep it up. To continue the openness of this journey that Elisa and I started on and so many people shared with us. I am just unsure what I will do as I am with everything else - except Sadie. I feel as though parts of my organs missing. I mean this figuratively since I am literally walking around without part of my organs from my tumor removal surgery. Nothing feels right in my body, mind or soul. I have no idea if that will ever change. I imagine it won't and just like how having cancer physically and psychologically changes you, you just adjust to a new normal.
The reasons why I am considering continuing with the blog are fairly simple. The first reason is that I feel like Elisa will be coming to correct all my grammar and spelling as soon as I finish writing and part of me hopes that will come true (I will do my best my love). The other and more sane reason is that so many people have written and told Elisa and I, that our being open about our cancer and the trials and love that it brought to us has helped people in some way. So many many people have said this, that no matter how unbelievable it stills seems to me it must be true. And so I suppose then that it might help others if I continue to talk honestly about what this journey, which is continuing, is like. This loss, this gapping wound that has been torn into the heart of so many people that loved Elisa, is part of that journey. Cancer does stop it vicious ravaging of your heart when someone dies from it. In fact it spread to the hearts of hundreds more I think. One of the feelings I have had through all of this, especially towards the end as everything became more painful, more difficult and less likely for a positive outcome, was that I should not to look away. it was so important not to miss any moment of being in life with Elisa and to do this I had to be completely present. For me that means that you have to be willing to hurt right along with and long after the person you love is hurting. Not to deny what was happening, not to allow false hopes or dreams to cloud my eyes so that I could see her completely and be with her completely for every minute that I was blessed to have with her. So perhaps if I can stand it, or if anyone can stand reading it, I may write about what this process is like, for me and Sadie. I don't really know.

I continue to be amazed, as Elisa and I were from the very start, at the incredible compassion, love and generosity of thousands of friends and strangers alike. It is so heartwarming and reassuring to me that when I look at Sadie and think about the world that she is living in and the pain that she will be unfolding for a lifetime, that I know she is so immensely  loved by so many, and cheered on by so many from all around the world. Thank you all so very much for that, for the solace I take in that is quite great. I am also amazed at the strength and emotional insight that Sadie processes. She is able to say when she is upset and sad about mommy. She is able to have real, (short) conversations about her feelings. She has dealt with it with a bravery that she does not even realize she has yet. Another beautiful quality handed down to her from Elisa.
She will stop in the middle of playing with me and ask a question like “Will mommy die again?” or make a statement like “I have dark hair and you have dark hair and when mommy had hair her hair was dark”. And after a short discussion she goes back to happily playing. She is able to process in her own way and at her own pace and for that I am so grateful, and a bit jealous. I often feel like someone else holds the remote to my brain and changes the channel at really inappropriate times. Whereas Sadie clearly is her own broadcasting network.
We spend a lot of time together, we help keep each other strong and feeling safe I think. She certainly keeps me focused on what is important and beautiful in this world, and we still smile and laugh a lot, together.

That is all I can write for now. I hope to be able to be a strong as Elisa was and to keep sharing this journey. Thank you again for all of your love and support and also for your understanding and patience if you are waiting for a Thank you card - they are coming…..soonish.