Sunday, July 13, 2014

Paris - year 4. 2014.

Zelda went through 11 surgeries in 3 months and is getting stronger every day with her Dad in Austin. I miss her with each step we take this summer as the past 4 years have seen the twins growing up in Paris. Creed and I have been here since the end of June with Ana, my assistant and good friend, in a lovely loft in the Marais. The first week of my teaching post ended this Friday. It is the 13th of July - the night before Bastille Day. Traditionally, there are "les Bals des Pompiers" in each neighborhood. The "Fireman's Balls" are held the night before 'le 14 juillet' and everyone comes out to dance all night in celebration. It is quiet tonight. There has been rain all week - all day today. It is the finale of the World Cup and people are inside glued to their televisions. Creed and I took a walk around the Marais tonight, as it doesn't get dark until 10:30pm. It was quiet except for the men from the gay bars spilling onto the streets. There was a drunk dressed in a leopard tank top and athletic shorts with many empty bottles of wine, singing on the street in front of the local school - he reminded me of Richard Simmons and Creed took his picture. The air was damp but pure in a very strange way. People were calm and and the music was thumping. Tomorrow we will awaken to go down to the Seine and watch the jets fly overhead - the exhaust trailing in red, white and blue - before the militaires start their parade down the Champs Elysees. Dinner with friends that evening followed by a crazy attempt to see the fireworks from the ridge of Montmarte looking out over the city from the steps of Sacre Coeur. Bonne nuit.

Wednesday, June 18, 2014

57 days and 7 surgeries later...

Day 22 (hospital stay #3): So, here is the update. Tomorrow morning at 8am, Zelda goes in for what we hope will be her last surgery for a very long time. The EVD or external drain on the outside of her head will be replaced and internalized with a VA shunt. The VA (ventricular atrial) shunt will continue - as have her other shunts - to drain the excess fluid off of her brain and then through a line to deposit it near her heart. The fluid will then be reabsorbed into her body and life goes on. Both she and Creed have lived with VP shunts since their first year of life. A VP shunt drains into their abdomen. However, with all of Zelda's infections and scarring from surgeries as of late, the battleground is ravaged and they need to drain the excess CSF (cerebrospinal fluid) into another receiving area. The VA shunt drains into the right atrium of the heart. http://neuroanimations.com/Hydrocephalus/Shunts/VA_Shunt.html Am I worried for this surgery? Yes, of course. Am I a bit freaked about a surgery that involves not only her brain but now her heart as well? Hell, yes. Do I want my daughter to be out of the hospital, healthy and happy? Yes, more than any worry or fears that I can have. Zelda is a warrior and is an amazing kid. We all have amazing kids and I hope that none of them ever have to spend this much time in the hospital and have this many surgeries ever again. So tomorrow, please hold good thoughts for Z. I know she will be ok. I have no doubt. We just want to go home on Friday. One of my favorite pics of Z when she was 3 years old...

Sunday, April 20, 2014

Queen of the Gypsies

Day 5 in the hospital and infections clearing from the CSF in her brain but growing from cultures in her abdomen - too many to list - so, I need to think about the magical Zelda. Last summer, we were in the RER to go to the southern edge of Paris where I had been teaching all summer. Evan had arrived the day before, so he and the twins were accompanying me to meet my students on their last day. The RER was empty, except for two Gypsy women - 2 Romas - who were sitting across from us. The French tend to be very wary of the Romas because of the stigma of pick pocketing and stealing from people on the street and especially on public transportation. Maybe it's my Magyar roots, but I am always intrigued and sympathetic as well as cautious and alert. As Evan ignored them and Creed snoozed, I smiled gently and Zelda stood up. She approached the amazing woman who was very thin with deep lines in her face and gold teeth. The other woman - plump and wrapped in scarves - eyed us suspiciously. The thin woman asked me in French about Zelda's cane. We talked about her blindness and as we did, Zelda started to touch the woman and feel her clothing and her arms. She told her Bonjour. The woman asked me if Zelda could take off her sunglasses so that she could see her eyes. I said yes, but that Zelda doesn't open her eyes often. The thin woman took Zelda's face in her hands and stared at her. Our stop arrived abruptly and as we got ready to descend onto the platform, the Roma woman whispered something to Zelda and said to me with a smile... "Madame, votre fille ... elle est magique."

Wednesday, March 26, 2014

2 kids: 4 shunts

Sometimes I have to keep myself sane by equating our lives to an inane TV show. Have for ever seen Portlandia? There is an episode called "2 girls, 2 shirts." And that is exactly what it is about: 2 girls open a tiny, minimalist shop and try to sell 2 shirts. It's fairly amusing but we like the name best of all. Thus, the title of this blog entry: 2 kids, 4 shunts. Not to rehash our lives, but when the twins were born as micro-preemies at 26 weeks and diagnosed with congenital toxoplasmosis, one of the issues that they inherited with the evil parasite was hydrocephalus - or "water on the brain". It is actually cerebral spinal fluid that is not properly draining through the brain. The CSF can either build up and compress and retard the growth of the brain causing a small head - as in Zelda when she was a babe, OR flood the brain, build up and swell the size of the head - as in Creed when he was a babe. Let me just enlighten you to how distressing it is to see a team of neurosurgeons stick a giant needle into your then 3 lb baby's head to tap for infection. Anyway, each of the twins have lived with two VP shunts since the first year of life. A ventriculoperitoneal shunt better known as a VP shunt is a valve placed in the brain that opens when fluid pressure builds and causes the system to drain the CSF through a tube that passes it down into the abdomen. Both Creed and Zelda have 2 shunts - one behind each each ear. The tubing travels done the side if the neck and into their bellies. Being skinny kids, you can see the ridge of the tubing on their necks and chests. They live with 2 coils of tubing that stretch as they grow to adjust to their height. The tubes open into their abdomen where the CSF drains and is re-absorbed back into their body. Zelda has also had a seizure disorder since she came home from the NICU at 5 1/2 months old. When she was a baby, she would get very pale and her lips would turn blue, she would begin to slow down her breathing. Our nanny, Kristen, and I would then rush her to the ER. One time, they even flew us ( Zelda and me) in a helicopter to Texas Children's Hospital for a shunt revision. Since the age of 2, she has been on anti-seizure meds: Keppra and then they added Trileptal, morning and evening. Zelda has a seizure about every 6-8 months - when she outgrows the current dosage of her meds. She has had seizures and been in hospitals as far away as Paris, France and Telluride, CO. I wish it was something we could get used to, but each one is different. So this past Saturday night at about 10:30pm, with Creed & Evan asleep, Zelda starting seizing. Her breathing was labored and her arms were jerking. Her lips were a deep, beautiful purplish blue. I woke up Evan and we gave her the Diastat suppository but it still wasn't working to stop the seizure. After 5 minutes, we called EMS. Evan accompanied Zelda to the ER while I stayed home with a sleeping Creed. Hourly check-ins were de rigueur all night long. At 5:30am, Evan reported that one of Zelda's shunts was broken along her neck. They operated at around 11am on Sunday to replace the entire shunt as opposed to just a revision. They went into her skull, her neck and her abdomen. Lots of little scars, a bit of shaved hair and voilà: a new shunt was placed. They have been so fortunate over the past 8 years in having well-working shunts, but we imagine this won't be the last time they will need a revision. We'll cross that bridge when we come to it... Thanks to all for your visits, calls, support and concern. Zelda should be back in school by the end of the week.

Thursday, August 15, 2013

Layers and feral cats...

This seems to be the first year of this annual Parisian sojourn-à-la-Sorbonne that we have had a steady stream of visitors. Today it was a former employee of Gail's, from her years as a manager at a streetwear boutique in Washington D.C. in the early 90's, and her husband and two daughters. The husband -- radio personality and program director Dave Marsh (NOT the Springsteen/Sirius one) -- asked me: "so what would you do here in Paris, if it was just you?". An interesting question for me, who seems to be constantly and exclusively shepherding my children (the feral cats) from métro to glaces stand. .......So here's what I said in answer to his question: First thing I would do is the flea markets: the Puces, the brocante. French culture is constantly crumbling and constantly being repaired and rebuilt, and the chunks of it that fall away and are available for sale are fascinating to me, and of course I am a collector at heart and professionally across four decades now and I cannot resist the perfect object. And believe me, the French are a tribe that can create perfect objets d'art: everything, from their buildings to their street art, is made, seemingly, as if time and budget were unimportant. I once considered purchasing an embroidered frock coat from the French revolution, at Clingancourt. It was $1000 and didn't fit me, but just the idea that it was AVAILABLE was amazing ......Secondly, I would drift from cafe to cafe. I wouldn't get far, since there are several in any Parisian block, each a jewel: with its own particular furniture, gilding, signage, and woodwork, and each appearing to be at least 75 years old. For all I can tell, each has its own regulars and maybe even its own language. My taste for dark beer makes ordering drinks at any of these cares a bit dicey (not much of that available locally), but I can always fall back on Gail's stock côte de Provence rosé order if necessary. ....... Thirdly, I would wander the streets and métro stations looking at the cross-pollination of street art (grafitti, posters, stickers, etc) of the moment, with the stone and iron work of centuries past. I especially like it when these things begin to layer and degrade together, and the intended meanings become lost and confused........ Like me in Paris...herding cats. .......guest-written by Evan.

Wednesday, August 14, 2013

"Versace" meets the "Blue Lagoon"...

Imagine a child running blindly through the Paris métro, long golden hair flying, bumping into strangers and white tile walls, ignoring calls to stop or slow down, even when the child crashes into a splatter at the bottom of the concrete Metro steps. ....... Now realize that the child is not Zelda but Creed. ..... Who at this precise moment is naked, being fitted by Gail with the pieces of the jacket he has designed for himself from the two satins (gold, and peacock blue floral) he picked out at the Montmartre fabric stores yesterday. The jacket design itself is a cross-breed of his vintage western suit jacket, and the ITALIA soccer warmup he got at the flea market on the Italian Riviera last week. Gail is calling this Creed's "Versace Period", with a little "Blue Lagoon" thrown in (he just rigged himself a loincloth out of the peacock blue floral satin). But it is the soundtrack for this fitting -- pulled up on the iPad by Creed himself, snatching it out of my hands -- that gives the clue to who Creed's "aesthetic ghost" is: Alejandro Escovedo, the "Real Animal" of fashion, which I suspect will make Alejandro extremely proud. ....... As frustrating as I find this boy to be, when I am chasing him or arguing with him to stop trying to control everything and everyone in his path I must admit that he is more me than I will maybe ever be. Guest-written by Evan

Monday, July 15, 2013

A bad choice on a good day...my Boy of the World...

We love going to flea markets - les Marchés aux Puces de Clignancourt is one of our favorites. The kids first went to Warrenton/Round Top in Texas when they were 6 months old in a twin stroller. So even though Evan has yet to arrive in Paris to join us this summer, Creed convinced me that we needed to go to "les Puces" this past Saturday. It's a bit scary to say that I have been hunting good stuff there for 30+ years now and my kids, for 3:) We have our preferred markets, vendors and alleys and the tall, wild haired blonde lady with the be-spectacled twins: chatty boy and blind girl are quite "inoubliable" - unforgettable. So, after Zelda had selected her jewels and Creed had bought his toy car and we had listened to the woman sing Edith Piaf in the marché Vernaison and the guy play the guitar à la Django....we settled into our favorite, red, plastic chairs at the non-descript café for our "frites", paninis, milk and rosé. No sooner had the food arrived and we had quieted Zelda with her IPod and tall, iced glass of milk when Creed ABSOLUTELY had to go to the potty. Well, "les toilettes" happen to be down a half block, across the street and down a long corridor of very expensive Art Deco stalls in another market. SHIT! So as not to disturb Zelda, I asked Kamel (the owner's son) to keep an eye an Zelda while I grabbed Creed by his hand, ran across the street to the corridor and directed him in French with an Art Deco vendor down the hall to the potty. I then ran back to Zelda where Kamel seemed more worried that someone would steal her IPod than Zelda. As soon as I returned to Z, SHE had to go to the potty!! Kamel guarded our food as I ran with Zelda across the street and passing through the corridor, I arrived at "les toilettes" thinking that I would catch Creed on his way out. I asked the guardian of the potty: "Petit garçon? Lunettes? Blond?" No, he hadn't come out yet. Pushing Zelda into a stall to pee on the women's side, I queried an old man. NO, he hadn't seen him AND then the guardian chimed in, "I saw him go in, but not come out." Ok, that's when the mom - in this case, ME - starts freaking out. The old man and I search the stalls - two are locked and unresponsive - never a good sign. Zelda has finished and we are ready to hunt for our missing Creed. Not screaming, but beginning to panic, with visions of a little lost American boy with no identification kidnapped into the rabbit-warren of flea markets stalls, I literally drag Zelda back down the corridor. Oui, they saw him go by, and NON, they didn't see him return. Shit, shit, shit...I curse myself. I will never forgive myself for sending my kid off, in a maze, in French, to pee by himself. And then Zelda and I emerge from the market and look a half a block away down the street .... And there is Creed, smiling and sitting at our table at the café. My boy of the world...he knew exactly what to do, where to go and had the confidence to do it. I was the one who had made the bad choice, as they teach in 1st grade. Don't make bad choices... I told Creed that when he grew older, he would write a song about this, "My boy of the world, you are the smartest boy I know, no tears, no fear, I love you so..."