5 semaines...a day in our life

Wake up at 8h, lay in bed reading about Fashion History until 9h when Creed begins to stir. Tea and a tartine while I go over my course notes for the day. Leave at 10h, to go to Barbes to shop for fabric "coupons" - remnants. Stop with Denia (my jazz singer friend who is visiting from Nice)& Creed to sit on the lawn near Sacre Coeur and a "pause." Back on the metro to get Creed back home to meet Claire, his nounou, for their day out in Paris. Run over to Les Philosophes to meet a young amercaine designer who is in town with her parents. Lunch, then back to the appartment to collect supplies for my class. Today we are studying how fabric is woven - the warp and the weft. We talk about Madeleine Vionnet and cutting fabric on the bias. We drape and pin some fabric on a live model to explain the "flou" aspect of dressmaking. Then they each get a needle, thread and a scrap of fabric. Hand-sewing straight stitches. They have learned that before the invention of the sewing machine, the finest seamstresses and tailors in Paris could sew 30 perfect stitches a minute by hand in the 1800's. We set the clock to see how many they could do. Home on the metro with Ana by 19h00. Claire and Creed meet us there. They have spent the day with a picnic at Les Invalides and then an afternoon running through the fountains au Parc Andre Citroen. Dinner is by 20h30, Ben - Ana's boyfriend and another member of the tribe who is staying here this summer - creates an amazing meal of fresh pesto, ravioli and gnocchi purchased from the Italian man at the Marche aux Enfants Rouges not far from our house. Dinner around our family table with Stephanie (a singer friend visiting from Austin), Denia, Ben, Ana, Creed and me. It's a quiet night - watching TV about a man who takes a train through the Moroccan desert. A bath for Creed, a bath for me. Our upstairs neighbors thinks we are making too much noise and instead of telling us, she dumps buckets of water over the balcony onto our terrace. Oh, the French! Bed by 23h00 and asleep 24h00...to the sound of our own private mouse who we have named Jeremy, scurrying around the loft.

Nostalgia sets in...while sitting in a café

Nostalgia sets in. I think it's because I am not here with both kids. My life in France reaches back through the decades but the past 5 years have forged new memories as a family. I started coming to France 40 years ago - does that tell my age? First in high school, then studying as an undergrad in the south. I returned and did my entire Master's degree in French Lit at Paris lll in the 80's. And then returned and went to design school at ESMOD, Duperré, and worked for designers then started my own line here. We did shows in weird clubs, collected our press clippings, showed in museums and appeared on silly TV shows. My battery of French friends includes those that I made 25 years ago. We have stories of crazy nights, crazy clients, crazy relationships. I sometimes walk down a street and I know that I went to a party in a certain building many years ago. Or stayed up all night in a certain club, falling asleep on the couches until the métro would reopen in the morning. I remember that cranky boulangère that would sell me my baguette every morning for 5 years running. The old woman that owned the gallery where we sold our designs was a Madame who housed prostitutes upstairs. So many stories... I can walk the métro and make the correspondance with my eyes closed. Why is this home to me? Evan asks me. I ask myself. I think it's because I always come back. I have lived in several different places since my childhood in New Jersey - I would leave them easily, sell my belongings and rarely return to visit. But in Paris, I know that I can show up with nothing and be back at home. The quiet, anonymity of the streets, the sweaty crunch of the métro, stuck for days in an apartment while it pours rain and even just hearing the whine of the sirens as they chase down an urgency - it's all comforting to me. Do I run off to see the Eiffel Tour? - no, but I relish that I can see it over the rooftops of my classroom. This morning Ana asked me "What is this place? - we are constantly skinny by eating bread & cheese and anything else we want. We can buy a bottle of rosé for 4€ that is better than the bottle for 8. We are happy in the rain. We have planes flying overhead shooting out red, white and blue exhaust. - It's like Disneyland." Ha! And then there is the bureaucracy, the red tape, work happens slowly - if ever. People don't listen, don't pay attention...I lived in Paris illegally for years - working the system, under the radar. You can't really do that now. But it's ok: I am making new memories. I am 10 and 2 now. 10 months in the states while the school year unfolds. 2 months in France while I teach and we live here. Creed is lonely this summer without Zelda. We go to the park and he plays alone. We laugh and remember how Zelda loves the elevators and escalators at the Pompidou or the woman at the Marché aux Puces who lets her dig through the piles of beads and buttons. Creed, Zelda and I have our little ritual of going to a café and what we would order - Zelda with her IPod headphones and her milk/water with a straw. We secretly laugh when we remember how she bonked the old woman in the métro with her long white cane and we would delight in every time someone would give the kids something for free. They are growing up here. We have photos from every summer - even the first year when Zelda had a seizure and had to spend the night at Trousseau. They have been buying fabric with me here for years now and they also have their favorite restaurants and parks. Do I hope they will continue to love it and think of it as home as I do? Of course - but then I have to remember that my children are not me. They have their own likes, dislikes and will start to formulate their own experiences. I want to continue to give them as much as we are able until decidedly they reject our options and plans... aside from love, protection and guidance...that's all I've got. Bonne journée.

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.

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...

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."

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.