February 2008


Coming home after such an extended period away is difficult to describe. Everyone is still waiting, except now poised ready to go. We need your help and company but at the moment it is difficult to provide any other words or needs other than…. time. Soon it will be food for sure and other things that we just can’t anticipate, the sound of the familiar voice.

Things are so different now and yet we are still in the familiar territory. You cannot plan for tomorrow no matter how hard you try. The nurses have their layer, the therapist have to change things around, the docs also have their requirements……..so just as before, every day is an exercise in the ability to adapt and be flexible. There is one amazing difference. The aggressive therapeutic schedule Todd is on…… I guess we are both on it. I hope soon we can integrate a small number of people, home feels a bit on the empty side without seeing all the faces and smiles of the people we love in it! The therapists are amazed with Todd and after every session they cannot wipe the smile off their face. I am not exaggerating when I say each and every day they are stoked and impressed with Todd, he also seems pleased and to enjoy each new movement and challenge. Nancy our physical therapist said something about every time she works with Todd he always does something that she thinks he cannot do at this point. After around their second session together Todd just lay smiling in bed for over an hour, it was so satisfying for us both! So in the usual form we are exceeding each and everyone’s expectations! I am sure we will have days when this is not the case and we have to work hard, but at the moment he is soaking it up like water after a long hike in the desert.

As information is taking shape, it seems the next two months are an intense and demanding time for Todd and me both, and all that engage in his healing. As we emerge from this period will we really be ready for our world to begin to take its shape. Find our new dreams, revisit our old…….and really be able to maximize what we can all contribute to our dear Todd. We need all your support and wonderful ideas (best of all smiles) and you will most likely see our needs and availability increase over time……..I can’t remember who said this to me (probably a few folks I am sure!) we are not running a sprint but a marathon. We must pace ourselves ……………….

and last but not least. Thank you. Thank you for everything you have all done and will continue to do in order to ensure both our survival and happiness. You all give us the strength that we really need now.

T&A

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A picture is worth a thousand words. I have posted the photo I shot of the ambulance taking us to the plane that flew us home. A plane without a toilet mind you and probably about 4.5 ft. floor to ceiling clearance. Loud, but private. We have landed here in the states safely but not without its demands. The transition has taken quite a toll on Todd (he is exhausted, frankly I am as well) and then there are some major changes that begin to approach this week. The therapists and the doctors have restricted visitation for the time being (I estimate 2 weeks). Stimulus and over stimulus are major considerations in the development and rehabilitation of brain injury cases. Todd and I have already both been placed on a rigorous rehabilitation schedule to allow for a strong and important transition from hospital to rehabilitation. So take comfort in the fact that we are both closer to you and HOME, we have missed you, and we look forward to being reunited with you all. It without a doubt takes time for us both to recover from and adjust to this major and most intense transition.

Todd returns!

His father was standing there as the ambulance pulled up to the hospital we had been in transfer mode for 2 days, it was a little emotional as I tried to hold back the tears when my feet stepped on Oakland terra firma (that is what sunglasses are for). We were up in northeastern Canada for our first fueling/toilet stop and it reminded me of the time Todd’s return flight from Germany had an engine fail and so they landed in Yellow Knife for a new plane to fly in and take them all home. Burr very cold and white. The second stop was in Rochester, Minnesota……there we were blessed with warm food. I was terrified of drinking water!

I know you must all be chomping at the bit to set your eyes on us both and see for yourself that we are indeed really home safe and sound. These next couple weeks are most critical in Todd’s medical and rehabilitation development. His medical team needs all his energy focused on his healing, medical assessments, and best of all rehabilitation. Once these things happen we are then relocated. Once we are relocated, very shortly, we should be allowed to receive a limited amount of visitors. I will keep you updated. This does not by any means underestimate the value, need, desire, and power of filling the room with love from our friends. We have a dedicated and truly wonderful medical team, which brings our family a great deal of comfort……and then we have all of you with your love and dedication to assure that we indeed make it through this demanding year of recovery. We love you all and we are so very very happy to be home after all this time, but with home comes a lot of new and unanswered questions. I ask for your patience over these next few weeks, to ensure Todd is safe and strong, and when the team lifts the restrictions it will still be limited numbers per visit.

So in case it is not clear. Todd and I have been placed on lock down……that is to say we go from therapy to periods of zero stimulus to therapy again. Todd and I want to see our friends but this period of restricted visitors is what is best for Todd. We have a long road ahead of us, this period is an important one. We thank you all for your love and understanding.

This city has really has a hold on us. It has become so familiar. We are moving through three seasons now. In late September and October we were able to watch the leaves change color and drop from their branches. While November moved into December we watched as the canal outside the AMC froze over a couple of time and people around us spoke of skating on the ice. I walked every morning passed the holiday stands (in the squares and outside the hospital) selling their seasonal treats, more specifically olliebollen. The miracle of the most hardy mosquito that endures the freezing temperatures and lady bugs in bed. One particularly beautiful day the snow dusting on the streets and bicycles while the sun shone this soft light. It was chilly chilly chilly. The snow is not a frequent condition here, so the people were all over the streets. A stunning day for the photographers, the morning after the fresh dusting of snow, you could find one around many a corner. The garden was a site to behold. As we move into February the sun comes out hinting at spring, we have taken Todd out in his special chair with wheels and basked in the sun’s rays while the air is still brisk. Every square and chair outside is bubbling over with all types of folks. (The chair in the sun being a hot commodity, for it is still rather cool in the shade). I am surrounded by water and yet I have not been given the opportunity to be on it, time really. We watch and try to measure the improvement in Todd’s strength and ability. I am chomping at the bit to move Todd forward to Home, it is without a doubt a necessary location for us both to continue on this healing path and find more strength and peace to move through the next season….. Frustration rears it very real head the transition is not quite tangible…… While the time here has taken its toll on us………every day we remain here we appreciate and enjoy the great gifts of this city and its inhabitants (Todd had a piece from an art show come to him since he could not go to it, lovely food prepared by our friends, great conversation, and those are just a couple of the highlights…..laughter where ever we can find it.)…..and also you at home. We are always trying to devise ways to inspire Todd and put a smile on his face.

I dream sometimes of being home and on my kayak, rowing in the peaceful morning before going to Todd……..the support of our friends and family, and the ability to be in a room and understand clearly all that is said. I dream of Todd being less drowsy….most importantly I dream of Our next chapter and season of growth.

Each day is really a fight for our life in the most passive of ways of course, for Todd each day is work. We are in a limbo somewhere between healing and home.

UPDATE: The sun has gone away and the cold has returned….burr. gloves back on.

Ahh…..things are improving slowly and the room is lighter as Todd’s medication have been subtly lowered and altered while we wait for most of that treatment to occur in the states, they have made some small and welcome moves here. We are celebrating every big mouthful of food that Todd takes, every wink and smile, and every waking hour….for these things have all been quite elusive as of late….. slowly but surely everything here is falling into place.
and here is Johnny’s two cents.

So Todd had a very good day yesterday and today, with a good deal more drawing movement and the desire to consume lots of food. His eyes are much brighter, and get extra bright when Annie, Alex, or any of the nurses walk into the room. We assumed that he was pushing against the medicines, but found out today that they had actually reduced one a little bit. Ah, what a difference a milligram makes!! It is so good to see Todd emerging from behind what I term The Giant Wall of Helping Friendly Sock Monkeys. We were drawing yesterday and he was following my directional instructions, shaky, but responding for sure!! Left, right, up, down. He was looking so intently at the dry-erase board, I could feel the victory well up in him. Annie was there at his side, and I sensed her energy aiding him. It is a beautiful matrix… The food thing was a pretty big deal, because the extensive eating yesterday (a record meal according to Alex) means more strength – – the simple cycle of input and output we all take for granted. Through this all Todd remains quietly heroic, intent on recovery, and tolerant of our persistent questions, stretching exercises, and other assorted interruptions. Annie sits with him calmly, and more than once I wandered off while they enjoyed some mother and son time together. The other spiritual bookend is Alex, and I am finding more and more fascinating details of the landscape surrounding the hospital, as I gaze out the window, trying hard to be invisible while holding Todd’s hand on her back. Pretty soon that won’t be necessary, which is good, because there is only so much time you can stare at roofs and smokestacks… In all, the goal remains for Todd to remain calm and stable until arrangements for the return can be finalized. The bonus in the last couple of days is the slow motion escape from the Planet of Sock Monkeys. The whole cocktail seems to be a pretty even mixture of love and modern medicine, and I applaud the alchemists on both sides.

Love and hugs and little miracles
Johnny

ALEX Speaks:
It seems to be snowing and raining simultaneously? as I write this.

We walk the city streets, creating threads of ideas that will inspire and encourage Todd for the immediate moments and those in our future. We are actually starting the day (out and about) a bit earlier than I have managed in some time really. We spend some of our time anticipating what lies ahead (as if that is possible). All we know for sure is the year ahead of us clearly requires both rock strong faith in Todd and the team that equals his healing and a great deal of love. Todd looks at our faces and believes what he sees. If you show him fear, then he fears……..if you smile his face brightens up. Please remember this as we are all one day reunited……

For the last few weeks I have practically begged the doctors to consider his demonstratively high levels and multiple dosages of epileptic medication (always wondering what is the important things to fight for). The dosages climb and with it so does the drowsiness. I have seen Todd over these four months in a much more communicative and stronger place as have others. Johnny and Dr. Pepijn have helped me see that to make even the slightest changes at this time could be a risk to Todd and our eventual return home. The changes could easily tack on an additional two months to our considerably extended time here……….and I really do not want to witness 3 seasons here in Amsterdam. So we must endure the heavy drowsiness and weakness that are the known and recognized side effects of each of the 3 medications Todd is currently taking and allow for the fine tuning as he is treated at home. Todd’s father has also helped me find a bit of peace on this subject……. Like I have mentioned before, I can occasionally became anxious and frustrated especially when you witness a barrier going up that limits Todd’s ability to amp up his recovery and demonstrate to all what he is capable of…….some of which we have seen, others which are still to come. Another way of seeing this, is Todd is being given the time he needs to gain strength and power… he is resting up. It takes time to adjust to change.

JOHNNY SPEAKS:
So we had the sweetest day yet here at the AMC. Alex and I got to the hospital a little early today to get him spruced up for his mum. Annie held his arm and let me tell you, when you see that woman smile, you can see that there is some very deep and healing energy that is flowing into Todd. The love on her open peaceful face made our corner of the room a little bubble of quiet and warmth. Toward the end of the day, after Annie and her wonderful host Truda had left, we were left with Todd in bed. I worked his arms for a bit, which calms him down, and then Alex massaged his feet and legs. When I suggested Alex give him a little face massage she went for broke and snuggled right up with him, her face buried in his neck. She asked me to put his hand on her back, and there they lay for quite a while, Alex feeling Todd’s arms around her for the first time in months, and the expression on his face becoming more and more serene. I could tell he was breathing in her pure love, radiating with bliss. I quickly found something interesting to look at out the window. So I think we gave Mr T a pretty good dose of the essential medicine. Between these two ladies, he is floating on the calm that will help him get through the rest of his stay here. A-yup. It was a good day…

Love and hugs and what the heck else do you need?
Johnny

p.s. Today is Groundhogs’ Day and leave it to my barely bigger brother Johnny to take my joke and run wayyyyyyyyyyyyy to far with it! So basically he arrived here with nearly a weeks worth of Mac N’ Cheese and of course the film Groundhog’s Day. I can still see the smirk on his face when I found that movie in the goodie pile! OH NO!!!! Johnny: OH yESSS! So tonight we will lovingly harass and pick on eachother while I am subjected to my very own joke becoming a reality. It will be the cheeeesiest!

Hey all,
It’s late at night in Amsterdam. Alex has just gone to bed and I am munching on some venison stew. When we were asking what was in it in the shop, beef or lamb, the lady behind the counter said “Bambi.” These folks have a very quirky sense of humor not unlike the Bay Area. Today was a day full of mild activities for Todd. We had some really good smiles and he heartily swallowed several sips of chicken broth. Still a lot of snoozing, but much more responses today as we fall into a pattern of arm stretches and exercises and drawing on his dry-erase board. As I said before, the anti-seizure medications (3, count ’em, three!!) are being laid on a bit thick in order to stabilize him for the ride home, where they can be truly fine tuned. So in the interim, the result is that outgoing signals are limited, and movement is pretty subtle. So we move his hands, arms, and legs through their paces, keeping the memory warm, and Todd helps in our efforts. We reassure him that these limitations are temporary. and it calms him, the movements soothing the worry from his face. The big news is that Todd’s mother is landing in the City of Bambi-eaters tomorrow, and will be at the hospital with us by the afternoon. I am sure that Annie will bring a new boost to Todd, give him some more reasons for smiles.

Alright, this little puppy needs to get some sleep.
Love and hugs and what time is it really?
Johnny