January 2008

Barney’s departure went smoothly, although door to door he said it took him 24 hours! Now that is one good friend, eh? Barney’s stay was full and at the same time we both struggled with the shameless human condition of wanting more…..oh so much more. With Todd so sleepy from the heavy dosage of meds for his epilepsy. Patience is the single, most fundamental ingredient to this equation, and at times I have to search for mine.

The time between Barney’s departure and Johnny’s arrival was not without amusement. Todd was able to laugh, at bit of a foolish mishap on my part….more than once I might add! The best of all was being greeted with the warmest of smiles. I have been missing those, lately. It was great to see Todd laughing at me, not just with me. It is odd to say that I am pleased to see him laughing at me but it is a nice and simple new and old piece of Todd emerging. The weekend here was oddly quiet with Tuti and his family (including MC and wife Mayra), on a weekend furlough from our ward. Honestly I was a bit jealous, but it gives me something to look forward to…..our first weekend furlough. While that is most likely months away, you never know. Johnny thinks we are going to pick up some momentum around the corner………now that would be just the sweetest truth ever. Love love love that guy Todd! We don’t spend our time together focused on our return home, rather we focus on getting stronger which brings the other closer to an eventual reality. ( We have our team set up through the month for our support, with next month on standby.)

There is a little café around the corner called Hein. I love to go there for lunch on my way to the hospital. When I walk in the two Dutch women tell me right away if there is no POM, I sit down either way. You walk through the kitchen to the back where there are about 8 tables, these two women cook and serve and do it all themselves. It is a simple and wonderful place to be. So that is where I took Johnny for his first Amsterdam meal shortly after he put his feet on the ground. We arrived to receive Todd as he returned from his PEG tube procedure. Todd’s nose and throat are now free and clear of any obstructions and we expect this to influence both speech and eating…. Cannot wait to return to him!

Well Johnny will not be the only one here to brighten up Todd’s spirits, his mum arrives on Friday for a couple of weeks. The last time she was here was a heavy transition time for us all, (with Todd in a coma at the time and then slowly out) so I have high hopes for laughing, eating, and general lovely conversations to surround Todd’s bed.

And now “HERE’S JOHNNY!”…………..
It’s another sunny Oakland morning here in my studio — wait a minute Toto, we are definitely not in Kansas any longer!! I’m waking up slowly in our wonderful accommodations (a thousand thank yous, to our hosts). Yesterday started off pretty slowly, with Todd a little extra drowsy from the sleeping meds given to him for his procedure. As Alex said, the new tube, going straight into the stomach, leaves Todds throat free of annoyance for the first time in months. So despite the Dormicum (I love the names they give these things), he was soon more alert, and we had some really wonderful moments, just sitting and talking with our eyes. I cracked a couple of jokes, and could feel more than see a smile come from his tired face (we later did get a couple of little grins – – petty good for being Dormicated). The general sleepiness is an understandable part of a process wherein the folks here are trying to get Todd stabilized for the long trip home. They feel like a temporarily dopey Todd is a small price to pay for the ability to return (time still undetermined), and the fine tuning of medications can be done once we get our dear friend stateside.
I must wrap up at this point, as we are about to embark upon another culinary adventure, which I think will be a continuing theme this week (Surinamese lunch today with Toetsie). We hope to perk Mr T up a bit with a thick book of horse images from Eric, a nice card and CD from Liisa, mouth care products galore from Sister Carol of the Order of the Phoenix, and more treats. So more words later.
Love and hugs and I am finally here!!


Todd’s birthday started off slow but he came around slowly after many congratulations. As Barney and I first walked into the room and we were met with our first “congratulations”! We looked at each other rather puzzled as I said thank you. It took a good hour, maybe more, for us to realize, here in the Netherlands, everyone seems to get congratulated on one’s birthday. Not just Todd either, I get them, our friends even congratulated one another! Now I can’t tell if that is customary or if we happen to be acquainted with some of the sillier of the Dutch population ….. or what is most likely – a combination of both.

As I said, the day started of rather quietly……..as we walked in excited with our birthday treats Todd was very sleepy. We were feeling rather deflated, but as we pulled out the cards I have been saving up and the calls from his family trickled in, the energy in the room built up. By the end of the day we were all sitting around the bed, laughing, smiling, with a Dutch rendition of Happy Birthday no less! We feasted on chocolate mousse and also a caramel balsamico one as well, the lasagna will have to wait for the week to come, but it was there….and so was Simone.

The trip to the Kunsthal Museum was bittersweet. Barney and I postponed our trip on Thursday for a variety of reasons, the best of which was to be joined by Mascha & Jochem (they were just in Oakland not long before Todd came to Amsterdam). We met at the train station at ten and embarked on the 1 hour train ride to Rotterdam. The show proved to be an inspiration to us all, and what a treat to see so many works by one of Todd’s favorite artist. Jean Tinguely is very influential if not a pioneer in the genre of art Barney, Don, and Todd teach at CCA. The layers of his work can inspire anyone from the artist to the engineer to the child. Movement everywhere! Without a doubt, a show for everyone. The museum itself, I was to discover, is designed be Rem Koolhaas-OMA so I was also in for an additional treat. I notice right away how the building met the sidewalk, which is generally not such clearly delineated moment. The catalog is in Todd’s drawer waiting for an opportunity to share………our first attempt was met with a sound nap. How much he would have enjoyed the experience was clear to us all. I fantasized about putting him in his wheelchair and heading off to the train station…..

It has since been determined that the food rejection we have been experiencing as of late is due to the NEG tube (nose tube), it seems like he is having problems swallowing with the tube in his throat (I can imagine). So this week the tube is removed and we hope to see an improvement in speech and swallowing. Boy, do I wish I could do something to help things along….I continue to bring tantalizing treats to make sure he will at all times have an alternative to hospital cuisine.

Alas there are times when impatience rears its head, but I beat it into submission. It goes without saying we miss our home, our friends and our family. There are some lovely friends here that keep us smiling and make Amsterdam also a special place, that is now almost home. Here the rain has slowed down and the sun considers showing itself.

Well today we prepare bring some delicious treats for Todd’s consumption! He has not been into his choices lately, spits almost everything out (but he has had his first taste of the Suriname dish POM, Mary and I ate that quite a few times, love love love it. It is kinda like a flavorful baked polenta dish)! I am always looking for his triggers. We hope that Simone, his speech pathologist, gives him the green light for the next level……Soft yet solid. I will bring some chocolate mousse in hopes that he finds that delightful, and some savory treats as well. We spent the last few days working, massaging, and reading. His sister sent us an architecture magazine and I swear Todd is so into it we read it from one end to the other… lingering on every detail, he never takes his eyes off the pages…….except to allow me to turn them. We gave Barney the run through of our likes and dislikes through the pages, especially this connectors on this one table! Can’t wait to show Johnny. We are working away on our own little projects and each day we try to find something new for us all to do. This week Barney and I are laughing a lot more, this is a good thing. There was a great moment yesterday when Barney and I were on each side of Todd cracking up………the best medicine for our Todd is to be surrounded by laughter and good conversation. These seem to be consistently his favorite moments…… and very little around here is consistent. I have no news yet this week on how the doctors feel about the progress but I do see signs of tests being done and one medication was switched off the IV and is now being administered orally (over the weekend)……… this is a step in the right direction. We still wait for him to emerge from this drug induced fog, his adjustment is slooooow going, but he stays awake longer, pays more attention…….so I believe we just may be making our way there. We have been saving all the cards as they came in this week, for today! Mostly these days he keeps his words to himself, with one exception when he talks on the phone to Barney. We can’t figure that one at, but Todd likes to keep us guessing.

On Thursday Barney (I hope to join him) plans to take the train to Rotterdam to visit The Kunsthal to see the Jean Tinguely retrospective before it closes this week. In order for me to join him we must leave early enough to make it back to the hospital in time. The show is called Everything That Moves. He is a Swiss sculptor known for his kinetic art, it would rock Todd’s world to take him to the exhibit, next best thing is to go see it and bring as much back as we can …..hopefully a catalog for his collection at home. This is the first book he loaned me when we met…… Jean Tinguely: A Magic Stronger Than Death. We have always been inspired to share, learn, and stimulate each other creatively and intellectually…but the title of this book now really seems to resonate doesn’t it? It makes me think a lot about where we started and where we are going.

Today we celebrate the miracle of Todd! Thanks to the dedication of our wonderful doctors and nurses, we have Todd with us. At the hospital I am constantly reminded, that despite these challenging times, we are indeed quite lucky. There are many other families around us that can’t say the same. What a complicated arena!

………..so instead of focusing on what we are missing out on ( like the event with John Law et all in Alameda on Saturday!!!) we get to think about the best thing of all that sweet Todd is still with us! How amazing and wonderful is that! Now that is something worth celebrating………. His mother is thinking about snow and giving birth to such a great guy, he was a baby first, his father too was there, probably even reminiscing at some of those days in between ( I am sure he was a challenge)! So once we do get home we will have a lot of celebrating to catch up on!

We are just content to be together, no matter where we are!

p.s. There were no chipmunks…………not a single one.

Generally speaking things have been relatively quiet here in Amsterdam, with the exception of Barney being sick….. I guess that makes things quieter actually. You should he ask him what movies he’s been watching. He is indeed feeling much more in touch with mainstream Americana (especially with what children these days are watching, wink.)! Hint: One movie he watched, Vordo worked on. He is better now, but that was very frustrating for him. Today he is finally able to return for a visit, it has been 3 days (almost 4) since he has seen Todd, but we did not want to take any chances. (Many people who have flown here, end up sick, it sucks.)

One of Barney’s highpoints while he was down, was a phone call from Todd and I checking up on him. Todd said “Hi Barney” something else and a clear “bye”. Barney was stoked to hear Todd speak, this was his first time! So that was really great for him.

As for Todd he is improving slowly, we had a quiet weekend as he adjusts to the increased dosage of the meds. He works, takes his time, and rests often. The meds seem to make him very very sleepy. So he has short windows of awakeness, with frequent naps. We accomplished our first short story from beginning to end and he is totally up to date with Apple developments. Each day is different.

Wed, yesterday, was a hallmark day for us at the ward. Simone, Todd’s speech pathologist arrived after an almost 2 week wait! Turns our she was waiting for the nurses to call her, oops. Well, since Todd and I have been practicing swallowing, he passed her tests with flying colors. We (he to eat, I to do the feeding) are now approved for squishy soft food. My days now start getting busy as I spend the morning hunting for some dietary inspiration for Todd. Today I will get some
soup and whatever else I encounter on the way. He also had a good response, Simone almost dropped a jar….Todd reached to catch it. That made us both look at eachother and smile with a wink! Yeah for good responses. This is a milestone! Can’t wait to see Todd today.

Wed Todd ate applesauce, made a face at the pudding she tried to feed him, and got some coffee. You should have seen his face when Simone tried to throw the coffee away, I laughed “Guess he is not finished with that!” Todd blinked yes in agreement! We are getting better and better everyday at expanding our communication and with the feeding comes increased strength in throat and mouth and tongue. So the words will come. After Simone left, Todd went again for some more coffee. Then I told him to take a nap to rest from all his hard work while I went and got a cappuccino and croquette for his next snack! Well he was wide awake when I returned and eager for MORE. So he ate the whole inside of the croquette while I ate the meat chunks out and the crispy outside ( Mary would have been totally grossed out I am sure, while Zander would have had one or perhaps even two himself). What a team! We have always enjoyed sharing. He then ate some of his mashed potatoes and gravy that came in his dinner…..he made a face. MC (Tutti’s brother, the Suriname friends from across the room) told me it is better if I added salt to it. I made a mistake here, I should have tasted it first! Shouldn’t feed the guy something I am not willing to eat!? Should I?

While Todd napped I came up with ideas of (soft and squishy) treats for him… so the list is well underway and the shopping will begin…..and Mary and I finally found the tupperware in the house. That will come in handy for taking things to and fro.

Since then Barney and I began our first Amsterdam foray for Todd food. It is in an interesting debate….too chunky, spicy, flavorful, rich, is it soft enough. So many things would make the cut for next week, but this week? Not unlike the shoes, you want to do Todd just right! Oh the pressure…..and we all know I am not going to be slaving away in the kitchen, but I will walk miles to find it! Ah well perhaps I will make the custard after all.

I tell you this makes me miss you all even more, with all the fabulous cooks we know Todd would be in mushy food heaven! Well no worries in good time…….. you will all be given the opportunity to fatten him up and please him with culinary delicacies. Of course not all at once. Some days we are content to be here with the best doctors and coolest nurses ever!………and other days we miss you all terribly, our cozy home, our espressos with soy milk (which we now have here), our favorite fish tacos from 51st (we go there almost weekly), and most of all the laughter and smiles you bring into our lives. We really really miss that!!!

Carol was telling me a story of Penny sharing some chocolate with bacon in it. Chocolate with bacon! Well we have always said everything tastes better with bacon, I guess that goes for chocolate too!

Food glorious food.

Hint. If you mail your cards this week, Todd will get them next week in time. Time for what? NO not leaving…… Send send cards. Hint: T=Aquarian….

“I already met her” That is what Todd said in response to meeting Barney’s sister who was visiting Sunday in Germany. He had to jog Barney’s memory on that one! How about that! What an excellent moment and without a doubt a highlight to our weekend.

Todd is coming around but he still has a lot to work through, these medications being a current challenge. Let’s see what this week holds. We are all a bit tired, but enjoying the time together.

I lost Barney in the train station today! I guess lost my not apply…. because to lose something (or someone as the case may be) implies you first had it! Of course, we had no contingency plan in place, so I was a bit unsure of how long I should “wait” at the station, not knowing whether he had jumped into a cab determined to find Todd. Alas, no one ran off and we eventually found one another and when he rang me we were within sight lines of one another! Ahh the miracle of pay phones, remember those?

Todd is holding his own, and the doctors and nurses once again demonstrate their commitment to Todd and his recovery. The medication cocktail and levels are the focus, and the surgery seems to no longer be a consideration. Everyone is feeling a bit guarded, but optimistic. They are playing things safe, and I believe I already mentioned we would be spending the remainder of the month here. It is fine with me, time gives Todd an opportunity to get stronger before the flight home…… and the doctors the information they need to assure a safe return home. His communication is improving slowly and I am getting better at reading his lips. Yesterday he clearly said “It is driving me crazy!”…. with his voice. So he seems to be able to get the point across when it counts! What he was referring to was a new and consistently noisy patient that has since been moved out of the room for everyone’s benefit, I laughed and told him I shared his feelings. I started looking for a paracetamol…Dutch aspirin. NO not for him, for myself, but then things quieted down. Next stop, eating. Todd watched me eating lunch yesterday with a longing in his eyes, it is clear that he is sooooo over the food in a tube! We do our little experiments (licks and tastes of things) and exercises while we await for the authority on this front to arrive. Simone, his speech pathologist, carries all the power on this front….. we hope when she stops in on Monday Todd will be wide awake.

Some of the nurses, I just found out, call Todd “Mr. Clooney” and they call me Mrs. Clooney ……….anything for laughs eh? It could be worse, we could be Mr. & Mrs. Al Yankovitz… but what I can say is everyone is starting to laugh more. Todd is looking quite handsome and like himself these days, and despite all his current limitations he still manages to be charming. It is really wonderful to see him emerge through the fog of medications and seizures. He lately looks like the Todd you see in the picture Todd + Baba there on the blog, except without his stylish sideburns. The eyebrows for sure! That’s what he looks like if he is interested or amused by the conversation.

Feel free to send Todd some cards this way (the address is correct under How to Help)…… and Johnny is on his way. Well umm I suspect in a very short time……he is really looking forward to spending Groundhog Day here!………..making some obscure reference to watching that movie over and over again for the whole day! Yikes. He will be packing us up and putting us on the plane home it seems. Speaking of movies I was watching Bullitt with Steve McQueen this absurdly early morning (couldn’t sleep, vitamins …. Jen knows all about this, guess you are not supposed to take ‘em before you go to sleep ….or you won’t.) and it made me homesick for our beautiful city by the bay….. amazing panoramic car chase! Amsterdam is without a doubt a romantically beautiful city, but San Francisco (and Oakland of course) now that is home. Dreaming of a walk at the Albany Bulb, Todd loves it there……..we will get there. Can’t rush things.

Last but not least. I got a great letter from a student and friend of Todd’s. Nice Reminder: One of Todd’s greatest gifts is to be able to move through the limitations of our own knowledge. He teaches his students and others (including himself) not to be limited by what they don’t know but to forge ahead and learn along the way, this is exactly the method he used to get where he is. This is what we are doing here, not hampered by the new and unknown territory, the only limitations are the physical and pharmaceutical …….and even those can’t hold us back. We are constant learning, and the thirst for new is visible. Through our own experiments we encounter successes and failures, all carry with them information, information in power.

I spoke with my aunt and my cousin Michelle tonight! (Her brother Gene wrote too! So I get them all in one day what a treat!!!! ) My mom writes me regularly she and her husband adore Todd! (but then again don’t we all) What a treat to feel the closeness of all the family. I include the SRL, the Kooks, the Blairs (Sisks, Ventos), the Cabellos, those in Chile, our dearest friends in Europe & Canada, and all our sweet delicious caring brilliant + amazing friends at home…. It is so BIG!!! I was just ever so reminded of all the power we carry collectively, and this my dear people is why and what Todd is working so hard for. You sustain us here, we soooooo feel all your love, gestures, prayers, read your letters and cards……… and I can tell you it really really really makes a difference. So even if you don’t hear back, you are heard. It is a loud and glorious chorus. In our sweet time we will be home, we daydream of all that comes of that. Until then………fill us with you prayers, letters, dreams, hopes, stories or whatever you have to share. (mizalex@yahoo.com is for those who feel less comfortable on the blog)

One should never underestimate the power of the family…. And our family is Big!
We are far from helpless!

Today Todd and I had a really us day! HE was really there, smiling at art ideas, laughing at my shortcomings (I suggested I might try painting collaboratively with him, but not sure I have any great talent in this department…….he dumped my last painting in the free pile) We really are both more sculptural, but hey any great success may first be met with a few failures! So you might be able to tell I am feeling a bit lighter, not trusting quite yet we are out of the woods, but Todd is doing better. Todd is showing his true and ever so bright colors. His natural triggers…….art, food, people, and now……..architecture! ….with a little passion and love thrown in. The smiles are still coming in.

Looks like we won’t be home this month per say….but some things are clearly out of our hands. We miss you but trust me you can’t keep us away from home and those we love for too long. (Todd’s visitors are Barney followed by John Rogers)That said……

Time has its gifts.

Thank you for all yours.

p.s. I will open up the mail again for about a week or so ( it can really take up to 2 to get here….weeks that is.) So if you want to send a card do….. emails are fine as well.

p.s.s. anyone got some new todd pictures for our entertainment…really dig back!

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