Our life with the ToxoTwins
Thursday, July 2, 2015
Just another shitty bump in the fucking road...
"Having conquered fashion, Gail Chovan takes on Country Music: her new hit single 'Just Another Shitty Bump in the Fucking Road', is in stores now."
- Evan Voyles, Monkeytown Free Press, entertainment section
Things here in Paris were going fairly swimmingly. We had settled in after a week, went out with new friends, entertained old ones and even got some work done. The twins were adjusting nicely to our crazy schedule. Creed was sleeping up in his cozy, windowed mezzanine and Zelda was with me at night. Days were spent out in the Marais: showrooms, cafés, Gay Pride celebrations, strange little art exhibits and the snazzy parade for Carnaval Tropical. So, when Creed said he had a bit of a headache on Monday, we decided on more water and no Orangina. Temperatures were nearing 90+ degrees...
Our nanny for these first two weeks has been Zoé. I like to consider her as an example of life coming full circle. When Evan and I married in 1998, I had dear friends come over from Paris for the festivities. Alex, Manu, Christian and Georges are all good friends of 30 years who I have named "les Célibataires" - the French Bachelors. Except for our wedding, Alex brought Edith. And then, they went back to France and had a baby girl: Zoé - who was actually in utero at our wedding. And this summer, she is "Nounou #1. Life is funny that way...anyway, back to the bump...
And then Tuesday, Creed woke up with a migraine and was vomiting - something that has happened on occasion here in our Parisian summer times.
But, this next shitty bump in the fucking road is that Creed's ventricles in his brain had been swelling. Last December and then again in March, Creed had an ETV - an endoscopic third ventriculostomy - to allow for built-up fluid in his brain to drain properly and lessen the swollen ventricles. (Literally they drill a hole through his brain...he likes to tell that to people.) This past Tuesday night, he was writhing in pain...vomiting again...and I had to dial the "15." I had seen these symptoms before. Based on Creed's medical history, the ambulance took us to the children's Hôpital Necker. They are well-versed in pediatric neurology. He is in surgery as I write this while sitting in a café in almost 100 degree heat, simultaneously drinking a glass of dry rosé and a cup of hot tea. They are doing another ETV, a septostomy and removing the right shunt valve that hasn't been working. So much new French vocabulary: ventriculostomie, septostomie, et ablation de la valve droite ...I feel like Emile Zola doing research for a neurosurgery novel for his series Les Rougon-Marquart. (For those of you not familiar with 19th century French literature, Zola wrote a series of 20 novels based on multiple branches of a family. As a writer, he was considered a "naturalist" - and a "socialist", I might add. Before beginning his text on a slice of French life, he would have his assistants research all of the vocabulary appropriate to the novel's setting: such as words specific to a coal mine, the railroad or a laundry...My bucket list has always included reading all of the books in Les Rougon-Marquart.) And I digress.
So, here we are...another shitty bump...it makes us jump out of our complacent seats, it brings tears to our loving eyes and once again, makes my kids stronger than I could ever imagine.
Zelda (who before I mention this, I need to knock on every beautiful wooden door here in Paris for luck) has not had a seizure in almost 18 months. I often laugh when I mention that she had even been in the hospital here for an extreme seizure during their first summer in France 5 years ago. But today I kissed Creed and being the twin that he is, he said, "Mommy, I miss Zelda and Daddy. And Zelda hasn't had a surgery in Paris yet, has she?" Good lord, this is a fucking bumpy ride...
Saturday, June 20, 2015
3rd Grade ... it's a wrap...
Creed and Zelda are now 9 1/2 years old. Third grade is over...and what a year it has been.
On an amazingly positive note, Zelda has not had a seizure in over a year - since last March 22 when she entered the hospital and had 11 surgeries and infections that ravaged her body for three months. She was a full on 3rd grader with an amazing team of instructors that integrate her both academically and socially into her public elementary school. That being said, she still doesn't get playdates or many party invites. She is happy and independent but doesn't quite know what to do with a "friend." We are working on that as well as a recent diagnosis of being on the autism spectrum - huh? Now they tell us? Zelda is feisty, silly and spirited and her brain works in twists and turns that sometimes wreaks havoc with her emotions. Each day is a new adventure. She and I just returned from a week in Houston at BELL camp at the Lighthouse for the Blind. What an amazing facility! She went each day from 9 to 3:30 where they had activities specifically geared towards kids with visual impairments. Zelda has always been integrated into the "seeing' world so it was interesting to observe her with other VI kids. She was definitely the most outgoing and adventurous AND vocal. The first day I received a call about her obstinance and use of "bad" language. Oops! We are working on understanding the appropriateness or lack thereof concerning the use of the F, H, and S words. Hmmm...But she did swim to her heart's content each day in our lovely Melrose Place-like airbnb pool. It was nice to spend a week with my daughter and have that time for us the two of us - I learn from her every day.
Creed - aka The King of Monkeytown - switched schools in October. He is now firmly ensconced in a private school for dyslexic kids and he is so happy. The school is amazing and progress is being made. On the other hand, he went through 2 brain surgeries this year - one in December and the other in March. Basically one of his VP shunts was not draining so they drilled into his head and performed a Third Ventriculostomy where an opening is made in the base of the third ventricle to allow the smooth flow of CSF. Oh, just Google it...
We have no benchmarks at our house for Creed and Zelda's education. When I remember back to 3rd grade at Allen W. Roberts school in New Providence, NJ, I had my favorite teacher named Miss Eddy. I was reading "Little Women" and I made a diorama for my book report. I also was head of my class in memorizing the multiplication tables. I have 2 now-rising 4th graders. One is slowly learning Braille and one reads a few words at a time. Life is different and my kids are amazing. They are joyful, kind, friendly, creative and absolute snugglers.
Some anecdotes for the year:
1. Creed: "Mom, I am going up to heaven tonight to visit Nana & PopPop (my parents). I hear that it is nice up there and it is run by some guy named Jesus. Actually there is God as well as Jesus. But God is a guy and Jesus is a girl, I think." Then the next morning..."Mom, I saw Nana and PopPop last night at midnight. They said to tell you something. They said to tell you that you are beautiful"
2. Creed to our babysitter: "Ok, I know all about privates. We all have butts, the same kind. But only boys have penises. And I have a French penis..."
3. Zelda: "Hey Gail, do I have to go to the hospital to get my vitals?" Me: "What are your vitals, Zel?" Z: "Well, there is blood pressure (she makes the sound), temperature (she beeps like the thermometer), and a stethoscope (she makes the sound of her heart beating.)
We leave on Monday for 8 weeks in Paris - it will be their 5th summer. They are so excited. Creed is anxious to leave our town and all of the mosquitos and Zelda just wants to explore the stairs, escalators and "ascenseurs" of Paris - namely her favorite place" the Pompidou. I will again be teaching Fashion & Design through an international program at the Sorbonne. Evan will arrive after a few weeks and we will join friends for a week at a chateau in the Southwest of France.
And the news is good, the long-awaited "La Petite Zelda goes to Paris" book is coming to fruition after all this time...waiting on the illustrations. You will not be disappointed! More on when we arrive next week in the city of my soul...
Saturday, August 2, 2014
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.
Friday, July 25, 2014
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.
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."
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