March 2008

Each and every day there is progress. The last week has been a bit more demanding trying to keep up with the inevitable changes and demands posed by a nurses strike (the end of which is in sight). I spend considerably more time at the hospital which means at the moment I rarely leave. It does help to be more involved with the unfamiliar nursing staff and tonight I left to rest at home and check in briefly. That, alongside with our busy schedule has kept me a bit quiet……routine as it turns out is beneficial to us both. Routine this week is a bit out the window but we are all working hard at the hospital to ensure Todd gets everything he needs and more.

Watching Todd heal (slowly) is without a doubt a huge gift and also requires a very clear and honest perspective. It is a bit like watching a snail cross the highway, without markers or references you could easily not notice or forget how far we have come. The steps Todd is making are small, amazing and steady. He is gaining strength and best of all he is more and more attentive! It is a beautiful thing to see Todd shining through the slowly lowering massive dosages of a triple combination of epileptic medications. (We are weaning one off, by lowering the dosage incrementally each week) The seizures remain at bay, we have very little idea of what lies ahead in the next chapter, but we celebrate the day-by-day progresses and achievements. Todd is gaining weight and strength and his therapists are often amazed. I say regularly to Todd that we continue to exceed most all their expectations……..and will continue to do so. We have gone through months in bed, ICU three times, induced coma also three times, and now Todd is… with the aid of a cool apparatus that takes up the majority of his body weight, walking down the hallways and stopping nurses and patients alike in their tracks! He is completely over most soft squooshy mooshy foods and is more in search of good flavors and familiarity. This week’s hits include his morning cereal (just as at home, crunchy is good) and tangerine juice, also brought him some delicious market hall ravioli ( a dependable fav at our house) and ice tea for lunch, enchiladas also went over well. He seems to favor savory over sweet, and his texture preferences sometimes come as a surprise to his therapists but not to me and those that know him. He is a texture kind of guy, likes guacamole but hates avocado from which it comes …that kind of thing. He is sooo ready to move on and we do everything in our power to provide him with the opportunity to do just that! His smiles are more frequent and this morning when we woke up together, side by side, I was greeted with the first sentence in weeks. Todd is still without a doubt as charming as ever! Every time I am faced with doubt or frustration I remind myself that there is no way we have come this far to be even remotely close to done, I also don’t believe that Todd would fight so hard if he did not feel clearly and strongly that he could come back to the life he loved so much.

The other thing I often say is …….we have an army behind us that have every intention of making sure we make it through. Thank you for that.

There are still so many people we would like to see and touch and truth be told I don’t even know where to start. Just keep checking in with us or me please….mail and email is a good place for us all to start.

Now I have to see if I can get my right boot off with a somehow broken zipper without resorting to scissors or an exacto knife! (Thanks to my handy dandy Leatherman the boot did make it off without any permanent damage, phew!) Just when I was contemplating how many days my socks could last, and how to take a bath with my right foot still clad in leather.


Now that we are home, we are in a new chapter that one cannot prepare for. It is a huge gift to finally be in the rehabilitation environment and the next few weeks hold so much promise and without a doubt many challenges. Todd is in an even more challenging daily program than we have ever known and we have had our share of challenges, Todd especially. The demands of his daily routine mean that once he has participated in all his scheduled rehab sessions… there is nothing left for him to give. What that translates to is – he sleeps. The docs have severely scaled back any visitors (and from where we were most recently that is saying a lot!)……. Even if you were able to visit he would most likely be asleep. Yet for all of you with your many questions and really unless you can see us or have been in a similar situation, it is difficult to clearly understand or grasp. This I know…as I am here by Todd’s side and still many of the answers we hunger for can only be given with time. Every day he makes progress, every day there is some new hurdle he has overcome, as little as it could seem to us who take every muscle and movement for granted. You learn how many muscles are involved with a swallow and a hand gesture, the turn of your neck, and the putting on of your shirt (this especially because the range of motion is great). The therapists that surround Todd are not only committed to his recovery but also celebrate his accomplishments (and sometimes tell bad jokes). Some of the limitations are real and others we expect and he surpasses. It is a great lesson to us all.

As for real information….here is a tid bit. With the help of apparatus he is standing! He has done this with his physical therapist a FEW times now! His muscles are gaining strength, also his tone and stamina are also slowly but surely coming along. That is when you learn about good tone and the other tone…. so much learning going on. We have many months of bedrest and other medical challenges which have taken their toll. It will take Todd time. It is the beginning of our chapter of healing, it is a long chapter, it may in and of itself be a book. Never will life be so day by day as it is now, I imagine. Today will rarely hint at tomorrow which is most often an entirely different equation…….that said today dear Todd’s smiles are returning. His face is bright with possibility.

The irony of this situation has never been so obvious as now with every day we are home (I want to say we) but for sure I am aware. When I go to the Berkeley Bowl and grab a tomato (which is out of season, so he would never allow such a thing) or look at the artichoke, dining at our table in the kitchen…. I am surrounded by the “WE” moments that for now are just I. So it is such an ironic and difficult thing to wrap your mind around…….. to miss someone who has fought so hard to be by your side. Who IS……and then when I come home at the end of our day to our house ………is not. To be so near our friends and family and not be surrounded by them, not knowing when that will be a beneficial time but sooooo looking forward to those days. The good thing is we do all have time, we can be together today or tomorrow or next month………..much as it ever was. It needn’t all happen tomorrow. It reminds me of an earlier blog where Yuksel speaks of the human nature: to desire in the immediate………..

Well change naturally takes its toll on anyone, some resist it more than others. Change challenges us to rise to thee occasion, be patient, and recognize that each day forward has its gifts and hurdles. We have been in a constant state of change, none so dramatic as the last few weeks. With change comes new hope, power, lots of work, rest, new environments, new ways of doing things, stimulus, isolation of stimulus, new faces….. If you look back over the last few weeks you will realize that Todd and I have been in three locations. That is a lot, considering how familiar Amsterdam had become and our ratio of time and place. Did you catch that? 3.

Things are now moving quickly in our world and slowly at the same time. We have now landed in acute rehab, after one more ambulance ride. New faces are slowly day by day becoming familiar, our team of therapists are committed and wonderful. The emphasis is now on routine, rest and work. Todd is making progress each and every day which brings all who are with him the biggest smile. Each day we see more strength and power return. I would love to tell you more but I have to shower and run. Todd and I are on a rather aggressive six day a week schedule with the 7th including therapy as well. Try to keep up with us……we are rolling now. Now you may have an idea why you haven’t heard from us lately.

……and to those of you in Amsterdam. We miss you and think about you.