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
J.Todd Blair
H6 zuid Neurochirurgie Room 129/bed 2
Postbus 22660
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.
November 19, 2007 at 1:24 am
Grrrrr!!! (said with scrunched-up face and uprolled eyes)
Maybe it’s SRL karma. Dunno. The care-package I sent last week… which has in it the 30-some cards, letters, artworks, etc., from the dinner… plus Chumby and other stuff, was “held” in the small-package world of customs. Maybe some grouchy officer was put-off by the stars and hearts drawn all over the box. Then it appears to have been “Released” later that afternoon, but you guys obviously have yet to see it. 😦
Fingers and toes crossed, that it will make it to you guys, today. I’ll call FedEx, actually, ‘cuz it’s said “International Release” on the tracking number status, since Friday. It’s in Holland. Just… (ugh).
You’d think they could have an extra level of expediting things, called “Urgent Love” or something.
Congrats on the fabulous recent progress!! You both continue to amaze me. 🙂 n
November 19, 2007 at 4:00 am
Hi Alex and dear Todd, I just found out from a friend in Europe about http://www.jajah.com. Do you know about it? You don’t need to download anything and the other person does not need to have anything, and you can call for free. And, thanks again, Alex, for taking the time every day to update everyone and to share your wonderful optimistic and loving self. I’m getting to know you and Todd in an unusual way and am looking forward to knowing you in person some day. Everything I hear about Todd sounds like the little boy that I remember. It’s nice to know (though not surprising) that he’s turned into such a beautiful, loved and talented person. Much love and healing energy to you both and to all your wonderful friends too, Mary Reed
November 19, 2007 at 7:47 am
Yeah for the proper shoes for Todd. Glad to hear that Todd is communicating more with you. Your a super strong lady Alex. I am sure each day that Todd is very thankful for that wonderful women he has at his side helping to take care of him in this difficult time in his life. I want to reach out and hug you both, thanks again for making time to keep an update on the life of Todd since the accident.
Hope each day brings better news for you both.
November 19, 2007 at 8:10 am
A differnet kind of wonderful.
Everything is different
and – oh it is/can be/will be wonderful
You two are wonderful.
JakeEddie is wonderful and he loves you – so loves you.
Crying … again…
*
A
November 19, 2007 at 9:42 am
Alex and Todd
I am so happy the letter and “card” arrived..many thanks to Jeroen. I thought that Todd would relate to it all.
I think of you two so much during my day and wanted you to feel my love and support. I will send more.
Life is full of wonderful differences……
may we greet them with fervor
much love to you two in the land of wooden shoes
Liz Y
November 19, 2007 at 11:13 am
Hello wonderful freinds. It has been a weekend of intensive rest and relaxation for me, and I feel fairly refreshed and renewed and ready to receive more artwork from folks for the Dec 1 event. ANd maybe get arrested for excessive alliteration. The art is starting to roll in, and I am meeting new folks as a result of it. So many people’s hearts have been touched by you, Todd, and Alex your love is increadibly inspirational to all. I know that Todd’s fear is lifted by your steadfast presence, and that it floods him with hope. It seems to me that with his horse power and your love at the reins, you two will pull through this with warm ellegance, stronger for it.
Others – – As Alex said, Todd is immensely enjoying physical mailings, so I will be putting together a package of flat work and letters (nothing bulky) to send over on Friday. If anyone wants to put anything in there, contact me via e-mail
jrogers@cca.edu
We all hope that the medical consultation goes well today. Fingers and toes and eyes crossed. Oh wait, I can’t type with my eyes crossed…
Love and hugs and double vision
Johnny
November 19, 2007 at 6:00 pm
Hey Todd and Alex,
You should see us now, so busy getting ready for the Dec 1 Blue and Green Ball benefit, it’s a real hive. It is challenging and FUN to be part of this community, and so many people meeting new people, groups that have worked together for years on projects, and people who have never met, everyone drawn together out of love. Music, art, machines, finance, law, medicine, a big, new hybrid. New connections, new relationships. Like Todd’s new brain? It would never be this good had Todd not pre-gathered all these people himself with his own love and considerable charm and inspiration. So it is bittersweet, but formidable, the future is bright, the present is already a new kind of wonderful, and most importantly, thank you.
November 19, 2007 at 7:53 pm
Hi Darlings,
Glad you found some shoes that will work. Sorry the surgery to relieve excess CSF has seemd to have become necessary. Know all this is painful for you both….Todd, literally, you, Alex, with all your empathy. Can only say, hold on….this can pass & will pass. Can only say, please give Todd warm cuddly holds from me and remind him how much his auntie loves him…..along with so many delightful people that I’m getting to know thru this tragedy.
Guess there are points of the rainbow that you can experience while looking for the pot of gold….how cool, if you see them…..
Toddy, just do your thing. Think well and go there.
Love you both so much,
Aunt Jane
November 19, 2007 at 8:31 pm
Sitting here teaching Todd’s class at CCA, and everyone is pretty much on track, hammering out their max patches and soldering circuits… Don is working his electronic magik and we are troubleshooting a wonderfully weird variety of projects. What Liisa said about this bringing such a variety of people together is so true. I met with Michelle Pred from CCA this morning, and she will help me gather all the workds from the folks here at school. We had orbited in simlilar circles for years (Crucible, CCA), and now another connection is made. The communty is getting stronger for all this, the magic chainlink carpet clicking together link by link…..
I also wanted to thank Alex for letting me talk to Todd on Saturday morning. I had the opportunity to relate to him firsthand the meeting with the city, and I could sense him listening intently. Wishing him the best firsthand was a powerful experience, warming my heart. Thanks, sister.
I guess I’ll get back to peeeking over people’s shoulders at computer patches I do not understand, asking how they will make things move, and helping draw together the connnection between the cyber and physical worlds.
Love and hugs and education
November 19, 2007 at 8:33 pm
Oh, this post made me smile – the thought of Todd in green pumas…. what can i do except bust out my cardboard dance floor, break out the grandmaster flash, and do the worm, or caterpillar, or whatever that friggin’ breakdancing move is! ha ha!
we’re sending you loving vibes here from the Bay Area, thinking about you and planning our december 1 party. 🙂
paxton’s new phrase is “purple light” which i find to be very soothing and calming. (nevermind that he was looking at a neon sign when he said it!). john law tells me the sign is a true neon, which is pure gases, not mixed with mercury, so it is lighter than your standard neon. ANYWAY, we’re beaming you rays of soft purple nontoxic neon here from Brisbane.
love love love,
jill, eric and paxton