36 hours free and counting

Toren had a really great day hanging out with Kristen yesterday... the weather was so grand they even got to go out for Ice Cream... amazing for the time of year.

He went over the my mothers for dinner when I taught Yoga, and all in all is doing better than any day since the surgery. As we speak he and Helaini are getting their feet done!! Then they are off to bake with Rabbi Jonathan for the farmers' market - this is incredible and positive progress. Hopefully OT, Speech and PT will start up again very soon.

How did we get here - is the question Toren asks again and again. There are so many ways to answer - but I know that one truth is that we have been carried to this point on the wings of generous prayers.

Thank you

Martina

Home again - Thank God

Well here we are back home, it feels wonderful and strange, and familiar all at the same time. Toren is doing really well today. The journey home was tiring - but he was thrilled to get back into his own space and greet his four legged friends.

We are trying to pick up our routines as quickly as possible, while still acknowledging that transitions leave us a little unsteady. The doctors are hopeful that much of what we have been seeing is still related to the recent surgery and the trauma of long seizures in September. Toren has made considerable strides, and has learned some new and very useful skills in terms of supporting his through the anxiety of the side effects that look similar to seizures. While he has had some seizures with changes of brain patterns, the changes are not the same as his previous seizures - which might indicate that the surgery indeed did the job and that the brain is reorganizing in a more healthy pattern. We continue to pray, to give thanks to all who have helped along this lengthy journey and we are looking at ways to enjoy each day, a give back.

With love

Martina

Smiling through the bumpy ride

Good morning Dear Ones

It is the early hours of Monday morning... another week starts with so many questions swirling around us. I have spent the last two nights in my own bed - or maybe in Winston's bed - hard to know which! It has been both wonderful and tough to be home... being in my own space and on my own is so unfamiliar and yet good. Being so far away from the kids while this journey remains so uncertain has increased my sense of helplessness. But as usual no upset is in isolation from many blessings

The dogs greeted me with much attention... and Tara make a wonderful welcome home dinner... everyone should have friends that express their love in that old fashioned way - a splendid dinner...

Sunday morning Cynthia and I took a relaxing walk before Sunday School and it was so good just to move, even in the rather chilly air... Winston thoroughly enjoyed chasing for his found ball on Skidmore fields.

The kids in my classes on Sundays all asked wonderful questions, inspiring me to think wider and deeper, and supporting me on my own journey towards balance. I am so lucky to have the chance to engage with them, learn with them and from them. We explored profiling and its merits and challenges. They are a fine assortment of decent people. What a blessing to work in community.

I got to see my mother, visit for a while with Helaini's friend Jeff.... take the dogs to the dog park... Winston was well behaved with all the dogs... but enthusiastically jumped on every human... several times. (our next focus for appropriate behavior!!!)

I got to putter around the house, do laundry, get healing and loving hugs from dear friends, visit and giggle with my mother. Chat through my anguish with wise friends without restraint because I didn't need to keep it together in a public setting.... all this said, I also got to miss my kids... and grieve over the pain of watching them both struggle with this challenge our little family has been facing for what feels like so long now.

Toren remains in good spirits most of the time. It is harder for him at the hospital because he is sharing a room, and while the young man is a fine person... Toren is very vulnerable to distractions and stimuli these days... therefore it adds to his stress. He was so thrilled to be with Helaini and to hang out with Jeff on Friday night and Saturday morning. Friday was another determined attempt by several folk to get an IV into Toren's reluctant veins. The veins won... no IV - and Toren was so compassionate to the nurses. He never got cross not after multiple - over 8 attempts (I stopped counting then) to get access. The access is important because if Toren ends up having a major seizure this is part of the way we need to stabilize him. The doctors have left his medicines alone this weekend... because on Saturday he had a seizure that looked like all the others clinically but actually manifested differently in that his brainwaves were clearly disrupted. This complicates the picture on so many levels. What we do next will be discussed this morning once I et back to the hospital and we all meet with his doctors. While this journey remains full of unexpected challenges and turns. I remain confident that we are in the right place and supported by warm and wise medical personnel. My father would say you might not know the right thing to do, but you certainly know what the wrong thing is - so don't do that. It is good advice that serves me well in these troubling times.

I found myself writing this blog with deep quiet sorrow. It is hard for me to share less than encouraging and positive news. I know that you are all pulling for Toren's highest and best interests... it is so hard to know what those are. Thank you all for holding us in your hearts and prayers. We all feel very loved and blessed, and that helps balance the confusing whirlwind of emotions that rush through us... it might indeed be one of the reasons these emotions keep moving... you are sending a tide of love and hope in our direction keeping universal energy flowing through us, therefore we are not stuck in a pool of hollow depression... but travel through those places.

May your days be blessed, and may you each know how much your caring and communicating sheds light into the darkest of places.

with love

Martina

Moving in the Right Direction

Good Morning all...

Toren had a good night, he is resting right now having been soundly beaten at Blokus, though he wasn't feeling so great while we were playing... so I am not sure how truly triumphant the win should be!!

He has only had a couple of very brief episodes today.... and last night - so apparently adjusting the medicines is working. Toren is also doing a good job of thinking positive thoughts when the tremors start, and that seems to prevent them from snowballing. We have had some very good conversations with one of the doctors opening doorways as to how we might move forward from a psychological perspective... starting to work on what Toren wants his future to look like. It is a good place to put attention and effort. The only way to change the past is to use it to reshape the future more positively, then all that has happened in life becomes of service, rather than good or bad.

Eve and I went out for a lovely dinner and then a walk last night... that was refreshing and centering as well as good old fashioned fun.

Today we are feeling upbeat and positive, this blip might indeed be a refocussing of our energies towards the future while we continue to embrace and enrich the present.

Fiona is coming to spend the morning tomorrow... then later in the day Helaini is planning of coming down and joining us. My plan if all goes well is to head back to Saratoga on Saturday evening and teach my Sunday class... and walk my dogs... long long walks on brightly coloured leaves. Come Monday the doctors anticipate discharging Toren... and if that is the case then I will drive back, pick everyone up and we will all head North together.

Thank you all for the calls, the messages, the notes, and the offers of support. I know my dogs are being well taken care of thanks to Kristen and Tara... which is a huge relief. I am excited at the prospect of sleeping in my own bed in just two more nights.... The A/C is on in this room... and it is rather chilly to say the least.

Blessings

Martina

Teasing Apart the Challenge

Dear Ones

It is Wednesday morning.

Both Toren and I are more tired than a couple of days in hospital merits, but it is the length of the whole journey that is wearying.

He is having many episodes each day... they are tiring in and of themselves. They appear not to be seizures - but some sort of other convulsive event. It is possible that this is a response to the medical cocktail. The last 36 hours have been about observation, and data collection. Now today, hopefully we will start to get a clearer picture as to how to proceed... because this is really unpleasant for Toren... and is clearly leaving him distressed, confused and he is loosing some small parts of his very hard won recovery. That being said... he beat me at Blokus once yesterday, and is still very chatty and aware of what is what... he is very upbeat most of the time.

Yesterday was a long day... but Eve joined us for dinner and Toren was thrilled to see her, we caught up a bit, it was the perfect close to our day. Dr. Doyle came by and visited. Toren was delighted to see him... concerned with his health and wellbeing (the doctors) - so very Toren - but he was very clear that he wanted to let Dr.Doyle know that he feels the surgery has made a positive change, and he feels safer for it. It is pieces of clarity and expanded vision during the day that make being here so important to me. Toren is truly grateful for so much, he is inspirational, living in the now, but also dreaming, and working towards an even richer tomorrow. He was as thrilled to see the kind lady who delivers his meals on HCC12 as the familiar faces of doctors and nurses, giving her a big hug, wishing her a good afternoon off.

Thank you for the messages, the calls, emails and the offers for practical help. Right now we are holding steady. Visits down here are so long - just the car ride from home is 7 hours plus round trip, I am reluctant to drain anyone's resources, and yet company definitely helps a lot. That being said, Eve will most probably come by tonight again, and that will be great. Fiona hopes to be able to get in for a while tomorrow... and if we are not homeward bound by then.... well... come visit me at wherever they put me in the padded cell!!!!!

In truth, Helaini will come down for the weekend if we are still here... I hope that we come up with a medical plan - start to make some changes, and then head home keeping close contact with his wonderful doctors, and of course that somehow, we get another miracle and these convulsions stop.

Toren is resting peacefully as I write this, the sun has risen, and I can see pigeons flying around from balcony to balcony. The trees on the rooftops here are still green... so strange after all that colour at home. We had a kindly roommate who left yesterday... Toren was sorry that he didn't get to wish him well.... he was meeting with Dr. Doyle during the departure. He was a young man in his early 30s his mother too was by his side. This honor - to be there for those one loves, is humbling, there is so little one can do, it is truly an act of being human, versus - doing human.

I feel renewed determination to live wisely, and generously. To be as kind to myself as I try to be to others. There is so much to learn in this simple white walled room, overlooking this temple to material aspirations, built on the foundations of thousands of hopes for the freedom to be. Ah.... well here comes the breakfast tray.

blessings

I have been staying here - that is the right choice for now.

Ups and Downs

Last night we came back to NYU for some follow up video monitoring. Over the past week Toren has started to have seizures again. They are mild, compared to his past history... but have been increasing in severity and length. He remains conscious during them (which is very good news), but one's limbs shaking for 10 - 15 minutes again and again during the day and waking you up at night is exhausting, scary and painful. On Sunday night he seized for over an hour on and off.

When we got here he had a CAT scan and then got hooked up to the video EEG. The drive down took quite a while, and thank goodness for David calling me and insisting I had company on the ride... it would have been too much to drive with him seizing next to me, and not having someone to hold him and comfort him. Helaini, of course came to the rescue, traveling down, handling frequent rest stops with me... seizures - equal frequent bathroom breaks. She also administered his meds on the way down, and mine (chocolate - not covered by insurance - go figure, it must be because it is preventative not just curative)

Kristen was wonderful yesterday. She was so supportive, calm and level headed, and is going to care for 'the four legged kids' while we are down here. Tara was really good at helping me keep it together yesterday as we figured out what was the best course of action. I am so blessed to have friends and family to help strengthen us. It is so important to know that one's back is covered. I slept at the hospital in a cot.. it was just fine. I have already received reminders that homes are open to us, and that dear friends are available day and night to talk through things, or just to listen and comfort.

While I know that this could very well just be a bump along the path to recovery, it is very painful. Toren is so good natured about it all, worrying more about disturbing my birthday weekend than his own discomfort. He keeps apologizing for the upset and concern. We assure him that he is a beloved priority, and that he merits our continued support. I am drained and hanging on. While I feel loved and cared for and held up by all of you who love and care for us, I equally feel very alone... Helaini is so brave and strong, but it is tearing her up to see me saddened, and to see Toren struggling. She is only 21 and it is so much to deal with. I feel the weight of single parenting most strongly these days, because in the end the choices the decisions fall on me, I can reduce their weight by leaning on those who love us, on resting into the cushion of faith when I am too weary for human comfort. But I would like to be able to let go a little more... ahhh well - not today Scarlet

The medical team has been wonderful, readily available, and supporting us during the week and weekend. I am confident we are in the right place with the right people. And hopefully we will know more sooner rather than later, and that what we know will allow the very determined Toren to continue along his journey of recovery.

Well... enough whining... it wont fix it... sky has lightened and in sharing and reaching out I feel your love holding us up. Today is yesterday's tomorrow - it will for sure home some unplanned joys.

with love

m

Home 9 days - still blissful

Well first I guess I need to apologize for the gap in writing - it has just been so very busy, and while Toren did not have a particularly bumpy landing coming come... it was tough for me to navigate. I am finally not exhausted. Toren has had OT, Speech and PT a number of times each this week. He has had dinner at Cynthia and Tara's homes, gone grocery shopping with me and his sister on different occasions - the walker makes that possible and safe. He even went on a couple of drives... and sat out last Shabbos in the sun on our deck playing games with his dear friend Emma. Kristen is with us 4 days a week, Helaini comes for the weekend and does another overnight on Wednesday. We are finding our feet. Toren is in remarkably good spirits and works hard at all his therapies, he has started to do his own dishes again YES!!

He helped Helaini cook dinner the other night... all this little steps add up to more freedom and comfort for us both.

Last night we tried something new - Toren slept in his room alone - it was perfect - he made it through the night and felt so happy to wake up quietly on his own terms. He even managed to be showered, dressed and eating breakfast by 9:15am - after having pushed to do his toughest vestibular exercises yesterday night before bed.

We laugh a lot, sometimes over the faux pas that his speech challenges offer us as light hearted relief. Every single day we are overwhelmed with the blessings of community and friendship and family, whether it is sitting, talking in through with a dear friend over coffee... or e-mails, or my yoga students welcoming me home. It was so good to get back to teaching, to practicing, I am looking forward to Shul services so very much tomorrow morning.

Today and yesterday the weather has been glorious and I have taken several long walks with Winston in the windy warmth of autumn sunshine.

We finally have approval to do the work on the house, and so that is the next exciting project to manage along with Toren's continued recovery.

Marvin has managed to fill in for me to help with dog walking, and freeing me up to run errands. The occasional meal prepared by friends has helped me feel supported and cared for. All in all, life is much better coming into this Shabbos than last. We are blessed and are all better people for this journey... and that makes getting up in the morning more manageable.

Right now Toren is out buying a few bits he needs with Kristen, then he has OT and is necessary post OT nap, to be followed by the treat de jour - a visit from Jack. These visits from friends and family brighten up his days and really leave him feeling loved and cared for and connected to the larger world, and our community.

Tonight we will gather at my mother's for Shabbos dinner - a change of scenery is always a good plan.

I wish each of you a weekend of joyful renewal, and sunshine.

With love and appreciation for the place you have made in your hearts and lives for me and mine.

Shabbat shalom

Martina