Chilling out at NYU 12th floor

Day 5 of our stay at NYU Langone, and it has been a quiet visit so far... Toren is hooked up to his EEG and the remote video monitor. As of today he is off one of his medications... he is in reasonably good spirits, but a little bored.... mainly struggling with the inactivity. We have watched a significant number of House and Law and Order episodes. Most days we have played Scrabble - with the outstanding result of Toren beating me once... he seriously enjoyed that and was delighted to know that I hadn't gone easy on him.

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

Progress on a daily basis

Every day since we returned home Toren shows continued improvement. It is quite amazing to watch the daily shifts. About a week ago we celebrated that he had enough strength in his hands to open the plastic bag inside the cereal box. This morning, after a couple of inches of snow he shoveled the pavement, carefully.
Toren has the best attitude one could hope for, he came with me to Shul for minyan today, and thoroughly enjoyed it. He was very touched to get the last Aliyah, and did a great job, even with the tremor in his voice he was clear and musical. He has decided to keep going to minyan with me. Everyone was thrilled to see him.
Toren is working diligently in all areas of his recovery. He has speech, ot and pt twice a week, and will be back at his cognitive rehab program 3 times per week after new years. He is learning to use a day timer religiously to help retrain his memory and allow him to be more independent. He reflects several times each day on his day, and he is appreciative of the process.
This weekend Helaini and I took 36 hours off for just girlie time and Toren spent the weekend with our dear friends Rabbis Linda and Jonathan and their kids. He had a great time, reading, playing games, watching a movie, going to services, and even managing to do hide work with Rabbi Linda on Sunday morning... he sanded two hides. Toren is getting stronger every day, every week. (Helaini and I had great fun, lots of yoga, great food, we even went to MASS MOCA - saw the Sol Lewitt exhibit - mind blowing).
Last week Toren started to use the treadmill again at PT and while he was exhausted from 10 minutes on the treadmill at a very slow walk (he napped for over 2 hours afterwards) however when I consider that he needed a walker the week previously, it is wonderful and truly miraculous. Toren has gone with Marvin several mornings to help take care of the horses, which he has thoroughly enjoyed.
While Toren still has work to do... life is returning to a more normal pace and healthy rhythms are becoming established. Or as Toren likes to say it is coming back to somewhat normal. We all remain touched by being held in the circles of prayer and concern by those who love us.

Home Sweet Home - Praise God

It was so good to get home.
To sleep in our own beds, to eat our own food... okay and yes the Chinese food left overs from Friday night too.
To shower in our own place, to run life on our own schedule, and not hear nurses in the background, not have vital signs checked in the wee hours.
The list of joys is long and worthy of note.
Helaini spent some of the afternoon and evening with us... allowing me to get scripts filled, pick up milk and chocolate, and walk Lilah in a light snow. It was cold but very, very beautiful, and it stuck - so this morning Toren woke to the beauty of it all and was so delighted. We got to play scrabble together, just Toren and I - a typical Shabbos activity (so nice to return to tried and true activities) - he did so well, it was truly a miracle to see the difference a week can make. Last week just mustering the strength to say yes and no was huge, this week he is making his way up the stairs carefully, but without being too exhausted upon reaching the top.
Today (Sunday) Marvin came over early so I could walk Lilah, and then teach Sunday School. Toren and I had breakfast together in our own kitchen, at our own table... he had his favorite cereal (raisin bran) and he was able to express his joy in the sense of normalcy that prevailed. It is so very good to be picking up the threads of our lives again. Toren went for a car ride with Marvin to enjoy the snow and the sunlight. He showered using the new shower chair... it is incredible the difference these simple tools make - providing a sense of freedom and dignity. Toren played cards with Helaini after she was done teaching, and then simply drifted off to a restful early afternoon nap.
It is heartwarming to climb the stairs, find both my children safely in my nest, and listen to the sound of Toren sleeping as I write this. While the journey is far from over, and while we will need patience aplenty for the road ahead, I am confident that we can do it with the support we will continue to get, with the strength we can draw from each other, and with the encouragement of our friends and family.
Toren and I are trying to put this in perspective, to let this crisis shrink into the distance, to learn what we need to from it, and to allow it to become only a bump in the road. It might not happen overnight, but in time it might just be the Thanksgiving we missed in North Carolina, or the chance to acknowledge the often overlooked blessings of speech, sight, moving of limbs, or the invaluable gift of loving community, friends and family.
I hear rumblings... time to enjoy the company of my wonderful son. Shavuah Tov

Friday Afternoon... preparing to go home

We have spent the morning meeting with social workers and therapists sorting out what support can best help Toren come home and transition successfully and easily. He is gaining strength every day, and it does a heart good to see him. Toren is devouring food every time it appears. Working hard to regain his skills. He is walking up and down the stairs with just a little support - which is such a leap it is delightful to behold. His PT spent a lot of the session encouraging Toren to pace himself... going slowly is safer, better for building strength and balance, and will allow his lungs to recover steadily. As Toren says he is excited to be leaving the hospital and excited to be experiencing life instead of just recovery. As nice as hospitals are it is not nearly as nice as being home, because as he says at home you can do as you wish!! (We will see about that!!)
So we are heading home tomorrow with a walker, and with the caution to have 24 hour support over the next stage of recovery, with serious instructions to take it very easy for the first few days home. I am stilling here watching him eat and feeling a sense of appreciation that seeps into the stored dark scary places in my being... and while it does not evaporate the fears and pain it does dilute them, and restores balance and expands the flickering flame of hope.
There are more meetings and more therapy this afternoon, and then Helaini will join us for Shabbos Dinner... no I haven't cooked, we will order something nice in - maybe Chinese food, so we can have the whole Jewish Xmas experience early.
The house is all clean, Melinda came and helped me get things organized and cleaned on Thursday - God bless her. When I got home I found a lovely veggie casserole from the Bernards... it was the perfect thing to find - so I had it for dinner, breakfast and lunch - what a treat. Walking with Linda helped me get some perspective, a good cry & laugh on the phone with Jonathan allowed me to gather the energy to teach my yoga class... and just to make you laugh... there was a fire drill in the middle of my class (God has quite the sense of humor). Marvin took a 30 hour shift here at the hospital to allow me to enjoy all those blessings... he and Toren enjoyed each other's company, and Toren was more appreciative of me after a break from my company.
I am looking forward to making a crockpot full of soup tomorrow afternoon, so we can simply chill out and enjoy the quiet, and yes fussing with Lilah who was very very happy to see me on Wednesday when I arrived home for the first time since the 11th. Life will start to take shape over the next few days, Toren will have out patient therapy for speech, ot and pt, and will start back at the NPRS Program hopefully next week... at lot of the challenges he is having is related to the strain of the last 3 weeks' trauma... once that is resolved and recovered from we will see what else needs addressing over the coming months. We are very hopeful, grateful and positive about the future, looking at ways to avoid another crisis will become a serious focus for us. As Shabbat draws in I am full of delight and appreciation. enjoy your families, your homes, your friends, and take the time to look at the candles as the flicker and sense the brightness of our love and tenderness for each and everyone of you.
Shabbat Shalom
M & T

Day 24 - Plans for Going Home

Toren will be discharged tomorrow - celebrations... more later
Smiles

Moving Forward - off to Rehab at Sunnyview

Toren really allowed himself to be pushed today, he played blokus, mancala, and we explored scrabble, with me and played cards with his recreational therapist. When his PT didn't come I supported him in doing his exercises, he is such a trooper. His breathing is much improved, but even gentle exertion causes him to break a sweat. Which is hardly surprising considering everything he has been through. Toren agreed to take 3 or 4 walks around the unit at a dramatically improved pace, with fewer stops for regaining balance along the way. But as he said he is simply exhausted, so he asked to get out of the recliner and go to bed. Dinner is cooling on the tray, but the nursing assistants are so sweet, they will warm it for him when he is ready to eat.
My day consisted of doing what was necessary to get him admitted to rehab, which is not easy at all, even though one would have thought it would have been obvious. Still a bed has been found, and we move mid-day tomorrow. Sunnyview has a wonderful reputation and I am confident that in-patient rehab. will give him the boost he needs and so richly deserves. I am sure Toren will find it less gruelling and more restful and varied than the mummy rehab program. Toren is feeling sad, and overwhelmed some of the time, but then he just gives one of his wry smiles and gets on with the task at hand.
I have already started to get the ball rolling in his having the necessary support once we get home... although it is hard to predict what that might be right now. Still it is important to be proactive and stay on top of the system. Toren's cognitive rehab program ends this week and then another session starts the following week, Dr. Joan Gold assured me that they will save a place for him. Hopefully it will only be a week or two into the program before he is strong enough to join them. He is lucky to have so much support. Your messages, emails and comments are a wonderful support to all of us. Hopefully Fiona will come up tomorrow morning and support us getting ready to transition to our next step along the way, I find transitions almost as challenging as Toren.
Helaini is on her way down this evening and she is always a breath of fresh air... he lights up when she comes in the room, or phones. It is such a joy to watch them together they love each other so dearly.

Day 19 - A little Stronger every day

Yesterday Toren was soooo tired, every trip around the unit resulted in a long nap, as did eating, and having a shower. But considering what his body has been through sleep seems like a reasonable need. That being said he still played blokus with me last night when I got back from the movies... Marvin spent a few hours down here, mainly keeping Toren company while he rested (this is more important than one realizes)... although they did explore the strange facts of Guinness Book of World Records. I got to see An Education - a lovely little movie was lots of interesting elements. It was the first time I can recall taking myself off to a theatre on my own, even in this place Toren is succeeding to keep me pushing my own limits.
Toren was happy to see me when I got back, which was rather nice.
We had a pleasant visit with Cynthia earlier in the afternoon on Sunday and I got to go to Washington Park and walk around the lake in the sunshine, and reflect on the magnitude of our blessings, and yes that was well balanced by the equal intensity of our challenges. Still every single day Toren is making progress. He is quietly determined to regain his skills and his strength. He is walking around the unit once more each day, with more strength and while he still needs the walker, there are times he can turn around without it... or stand up without holding on, all great accomplishments for a man only out of ICU for 4 days. He just got his IV removed... and is truly thrilled to be free of it. One of the Neurologists saw him walking in the hall today and said she was stunned and delighted with his progress.
I share with Toren your emails and comments, and he always smiles. He is still not talking much, which is rather strange, but I am confident that it is only temporary.
Today he had a visit from OT and I am sure speech and PT will follow. We went down the hall together to speak to the Case Manager, and the process has been started to get him to Sunnyview Rehab hospital. I am also reaching out to his regular TBI case worker to get help at home when he returns... which we hope will be within a couple of weeks, once he is able to do stairs, etc.
Toren is an inspiration, he is sad and shares that with me, but he is also aware of how blessed he is. Even exhausted he lifts a hand to wave when he hears me on the phone to people he cares about. I came across a lovely quote recently - Sometimes the most important thing we do in our day is the rest between two deep breaths... Toren is mastering resting between.