Trains, dreams, friendship

Martijn admires a model train exhibit on March 30th. This was his last outside walk before the lymph edema swelled his left leg beyond capability to take a walk. He loves trains and this painful trek was worthwhile. Look at that smile.

Barbara Greenberg outdoes herself again, baking Susan a spectacular chocolate birthday cake. Saturday was my birthday.

The best present I could think of was to buy us a comfortable, practical bed that will keep Martijn's painful leg raised. Here is the bed set-up team surrounding a smiling Martijn: his brother Janus, Olena Breyman and Maurice Schoffelen. Getting these electronic beds up a staircase and set up was a yeoman's work. 

But our hardworking team enjoyed the rewards of seeing these two bedbugs together. We hope that having these electronic beds will allow us to stay next to each other as our journey continues. 

With Martijn perched in his zero-gravity chair across the room, our hard working bed-team joined by Ursula Glunk (front right)  and Krista Knopper (under the artwork) for tea and Barbara's birthday cake.

Martijn and I try to keep our spirits. We face this journey with full knowledge that these are our precious final days together. We have been consulted by our wonderful general practitioner, Maurice Bom, who has been compassionate and honest in delivering the information of what we can expect as time passes. We are aware of various palliative treatments that should keep Martijn comfortable and pain free. Although this knowledge is shocking, we try to keep on living and loving since that seems the sane thing to do. We have had expected breakdowns filled with tears, and this is so good, so natural, so bonding. I have asked and Martijn has agreed to write me ten little stories from our cats point of view and to illustrate with his wonderful drawings. Tonight, at dinner at his mother's, she asked that we record his voice. I was touched to tears by this since it is his voice I think I shall miss the most. That gentle voice filled with wisdom and mirth and corny jokes and deep thoughts.

We are trying to discuss the weighty items that need our attention but this we find perhaps very difficult to do. And part of this is how and when to allow friends to visit without taxing our fragile cocoon. We shall do our best to do this well. I feel more and more embarrassed that people think I'm strong about all this. In my private moments I rant and wail, shaking like a leaf in a terrible storm at the pain and loneliness I already sense. I have no idea how my emotions will be minute to minute. It is Martijn who centers me and what will happen when that needle no longer points a better way?