We have had a few visitors providing a connection to our real world, and giving us a wonderful break in the rhythm of the days. Newly ordained Rabbi Emma visited yesterday, Cynthia and Gina on Saturday evening and Eve was over on Friday night. We are so lucky and blessed to have the support network that we do.
Toren has a wonderful view of the East River, we watch the barges and medical copters. The nurses have been wonderful skilled and kindly, the doctors have been open and responsive, truly sensitive. I am relieved by the seriousness with which they are all approaching the situation. The plan is to continue to slowly reduce Toren's meds, hopefully to record just a small seizure (something different for Toren). The waiting itself is a skill, after months of praying for no seizure activity we find ourselves hoping reluctantly for a small seizure. Each night as I leave the hospital and kiss Toren goodnight he reminds me of his wishes should the next seizure be fatal. We live in the face of that possibility and equally refuse to be defined by it.
We make plans, talk about a future that we can shape, a future post potential brain surgery, a future that allows Toren to move freely, and without constant angst. It is hard to see beyond this point and yet seeing beyond is sustaining and inspiring. The big challenge is in not shutting down... somehow we manage. Last Night I walked almost all the way back to the Rudin's G-d Bless them for offering up their home as a refuge, a quiet none medical setting with bright morning light. Walking settles me, I watch people from all walks of life allowing the music of an array of languages to wash over me, the rich potency of smells, and colours of clothing. If one has to be on the journey that we are on, then at least we can count the abundance of blessings scattering along our path.
So for now we wait
I very much relate to the irony of praying for no seizures and then waiting and wanting them to occur! We very much hope things work out for Toren. Hopefully, you will be home by the time Josh goes into NYU. But, if not, we will stop by and say hello.
ReplyDelete-Jerry
Hello Martina and Toren,
ReplyDeleteYou have both been on mind so much this past week and I have been anxiously waiting for some good news. It's funny, isn't it, to actually wait and wish for a seizure to occur? Well, if they have to happen, this is the best place to be.
This week has been filled with lots of emotion, stress, and a long list of to-do things. Getting ready for spending 3 weeks down in NYC is quite a job.
If you are still there on Monday, we'll be in the O.R. waiting room for most of the day and then Josh will be wheeled up to the Pediatric ICU on the 9th floor - opposite side of the hospital (where the elevators are very slow!) Stop by for a visit if you can, we'd love to see you.
Lots of love to you both, Robyn