Today we finally scored the shoes! Selby and I walked down the street looking (again) through every store analyzing the flexibility of every acceptable shoe, looking for just the right combination of ankle support and style. Of the two pairs of shoes (we had no intention of ending up without what we needed) we decided to bring to the hospital, Todd finally ended up with some green suede puma high tops ( for the ankle support) and a yellow stripe approved by his nurses. This is as subdued as we could pull off, it was a bit hairy for a while there with a multi-colored overly decorated pair of basketball shoes pairing off against some black and purple shoes of the same ilk, but nonetheless with some timely support the issue at hand is now but a task accomplished……. And he looks like himself.
Todd was a bit on the sleepy side when Selby and I arrived. They had a nice but brief visit and she talked to him even when he was snoring. He has beautiful freesias by his head now. After Selby left, Todd was awake and focused our entire visit. Huge and yet small change from the last week. We spoke (I mean that figuratively) but Todd and I can communicate without direct words, often I speak while he responds with his eyes and hands and leads me. It was a really nice visit a very special day. We had the second visitor later in the afternoon, Jeroen stopped in. This was our first meeting, he and Todd had been corresponding for some time and met during the show. He had with him a letter from Liz Young and an additional printout of her amazing artwork. Todd spent a great deal of time reading the poem she wrote, savoring the images of her work, and then the letter. It really seem to strike a chord, an elegant combination of beauty, struggle, and wonderful moments. Is it the art or the words or the art in the words? It is without a doubt the most wonderful food for him. Todd spent the rest of the day wanting to read his letters and we have no new ones at the moment. I think the cards both stimulate him and surround us with the things that we miss so much…. The people we care about. So since we have no date of departure I ask you to send us letters and cd’s of music straight direct if you’d like, or to our dear Susee who is coming next. The trickling in of letters as the days dance by will be just the thing that fills the room when it feels empty here. Again with no words, but he has managed to steer clear of the painful lumbar puncture for two days………not to bad.
Sunday. Today our lives unfold one more layer, and we maintain the patience that is necessary to survive. The pressure builds up the consciousness is minimal today…by the end of our day the doctors are back in performing both a lumbar puncture and a drawing fluid from his head by syringe. It is normal to have our up and downs but this is the final stage before the next surgery. They have given Todd’s body the time necessary for his body to naturally regulate his CSF fluid production. At the moment all signs are pointing the fact that this does not appear to be happening, so they will then deal with this issue surgically. We have all hoped to avoid this surgery on so many levels……but this is so much bigger than us. It is out of our hands. With Monday comes the medical opinions and scheduling, so we wait. It is hard sometimes to see Todd struggle so hard, harder still to witness his pain. He has been through enough, but we will continue to fight for the great future that lies ahead. After the fluid was drawn, Todd spoke to me, in what was an intensely wonderful moment. He struggled to speak and did, the first time in 5 days! Love does conquer all. He held my hand so tight neither of us wanted to part…..it was late and the nurse had already given me a couple hours grace beyond visiting hours so part we did. Some tears on my cheeks, but I am also a big cheezy sap!
I will share a little bit of what I told Todd that made him speak last night……. (but not all)
I think about all the change that lies ahead and I am not afraid. While I know it will be different, I trust it will be a different kind of wonderful………
Peace and Love.
Todd + Alex.
p.s. The letters can be sent to
Academisch Medisch Centrum
H6 zuid Neurochirurgie Room 129/bed 2
1100 DD Amsterdam
Please don’t send anything bulky or too precious to us here, since we still don’t know if we are leaving in a few weeks or a couple of months and I try to prepare for both. The suitcases are a bit full already, I may have to leave stuff behind (or ship it). Cards are wonderful, photos, art images, new music on cd….. I have no printer so these are the things that he needs and the things which really seem to resonate. It would be fun for us both to have those letters trickling in. So waste no time cause we will be waiting for those letters!!!!!!!!!
Also thanks to Babalou’s initial work and some additional requirements I now have skype up and working. If you have skype we can talk for free or I can now phone for less $$$$$$. Each day a little more is manageable.