January 3, 2003
Dear Friends and Family;
Yesterday’s conference was dispiriting. Noah’s progress continues to be stalled by persistent nausea and light headiness when upright. Still, he bravely insisted on going to the conference room rather than having the conference room come to him.
Afterwards, I spent an hour with him in occupational therapy and physical therapy. He is determined with the smallest of tasks and willingly responding to all suggestions. However, he does not last long and can be exhausted with efforts that all of us take for granted. It is difficult to visualize where he will be in 5 weeks when his discharge is expected. His rehab team continues to insist that his progress will be rapid once he gets rolling.
More and more I realize that rehab is about WORK and patience. The progress is measured in microns not meters. Of course, this is a pace no one, except the therapists, can relate to. Those of us closest Noah share the time warp and wish each day were 72 hours long rather than 24. The therapies are difficult to observe as a parent because I still have the awareness of the rest of my life spinning along outside of the hospital with its time frames and commitments and things to do that are done so quickly.
Time with Noah is like watching astronauts repair the space shuttle. It takes hours to unscrew and screw in a replacement part on the exterior of the space ship. Why? It is because they must operate in a hostile foreign environment. It requires preparation to enter and exit and must be negotiated within a protective suit that severely restricts the simplest of movements. Every time Noah gets out of bed, he goes outside of the spaceship. I can observe but I can’t be there with him.
His wonderful Aunts, Janet and Linda, have come and gone and will be missed. His dear friend and Professor, John, has returned to the University. Marilyn and I continue to commute back and forth between Hood River and Portland fitting the rest of our life into our otherwise topsy-turvy world. The absolutely worst time for me is the driving. How much of our lives we waste going places instead of being somewhere. My New Year’s resolution will be to allow myself to be here now, wherever that may be. I am learning this from Noah.
Nothing brightens Noah’s days more that visits or entries in his guest book at the website.
John
