Good morning dear ones,
Today is erev Rosh HaShanah - it takes conscious focus to relate to that here in the timelessness of Neuro ICU - I imagine many of you getting ready, making food for those you love. Such simple pleasures. And yes I know some of you are rushing and feeling pressured.
I want you to know that I am with you in spirit, I sense that this year will be full of many things, ups and downs, challenges and triumphs - I have also come to truly appreciate that peace is not an external thing, no matter how much we acquire or accomplish - peace comes from a rare mix of action and acceptance. I wish you all peace of soul and the power of wisdom. May your days be full of blessings that you have the ability to notice, and be nourished by.
Toren appears to have been seizure free since midnight (ish) on Monday night.../ wee hours Tuesday morning - this is wonderful news - Praise God. Toren is so strong he has spent many moments - trying to sit up - and/ or remove the various throat/nose tubes, this is my retribution for having pushed him to workout!! (Krit & Helaini I hope you can truly appreciate the humor in that). He appears to have developed quite the tolerance for Propofol - the anesthesia!! - and is way more active on it that the nurses expect. (So very Toren) Right this moment he has been resting comfortably for an hour and a half... having tossed and turned for several hours.
Eventually I left here last night to sleep in the beloved FACES apartment bed!! What a gift... so now I have the quietude to be present to todays challenges.
Last night they started tube feeds, which quite honestly make him restless - but are necessary at this point. Hopefully today the Epilepsy team will start the wean from that and his brain will stay quiet and he can be taken off the vent... it may take several days. Everyone on the team wants to go slowly to protect him. The doctors are wonderful and very informative. Each staff member brings something unique and important to his care, to our view of how to best support Toren in healing. The nursing staff are an inspiration - it makes me even more respectful of the choice of career that Helaini is following - these women are truly angels of mercy. This hospital is so family friendly - I never feel like I am unwelcome, or intruding - it is a wonderful culture - they allow us to help and is soothes my mothering soul to be able to keep caring for my beloved son.
Our friends Rabbis Eve and Elliot came down last evening and gave me a break - I showered and changed (everyone was in favor of that!!) Elliot brought me a Makzor in case I don't get out to join the several communities that have generously offered to welcome us. I am self medicating with Cadbury's Dairy Milk - and yoga in the cracks(okay more chocolate than yoga)... both serve a unique purpose. There is a wonderful salad bar across the street, and I have a fridge full of goodies thanks to Fiona. I even made myself a little veggie meal last night - So yes I am taking care of myself, which is as many of you know tricky for me!! Thanks for the encouragement!(read nagging) Marvin is very kindly driving my mum down today - he is too under the weather to visit Toren himself. They will stay overnight and then head home tomorrow late afternoon. Helaini will be back early on Friday for four days. It is easier when we are together, our little trio.
Thank you all for reaching out - I read every e-mail and comment several times, it helps - I share what you write with Toren... Please send me emails about your lives, or the world at large... to distract me from this world, and to help me feel part of your lives. I send you love and wishes for a joyous and healthy new year.
Martina
Yeah..Okay Martina..No you don't want to hear about my life...You already know it all too well...Doesn't change just gets more stressful. I thought of you especially last night when I put my tablecloth on. It was one that Carol made for Lenore. I know you would love it (pics on facebook). I will also keep on my table tonight a watercolor painting you made for me years ago that says "Shalom" and know that you will all be prayed for tonight in our home extra..... :)
ReplyDeleteGive Toren hugs and kisses for me...Eat...Relax....Oh did I mention EAT...(did you mention something about nagging) Love you all...
Martina, I really did get a good laugh when I read that. And for some new info. Toren was very excited about Bella starting school so please tell him she did great! Got right on the bus and I am patiently waiting for her to come home from her first big day! Glad to hear that you are doing ok and hanging in there. Again please give him a big hug for me and tell him that I cant wait to see "my big brother" Lots of love to you all!!! I will continue to keep up on your updates
ReplyDeleteShana tova! Glad to hear that he is making baby steps toward progress - slow and steady always wins. I have faith that this family can begin the year with a renewed hope for Toren's health. Keep eating that chocolate! Here in Washington we are preparing for meals and services and for bringing together those who are here, and including those who are not in our hearts (my husband is currently out to sea, as Toren knows). Hugs for everyone, and an extra hand-squeeze for Toren.
ReplyDeletePetra
it is truly the blessing for a good new year, how remarkable you all are!l'shana tova
ReplyDelete