Five Year Anniversary

November 1 marks five years since Colby’s seizures began. As the seizures continue, we lose hope about them ending. We lose hope about a medication working, we lose hope about surgery working. We lose hope about acupuncture, diet, vitamins, and every therapy we’ve tried. But it is only hope for the seizures stopping that is slipping away from us.

Looking with a straightforward openness to the possibility or likelihood that the seizures will always be with us, we now focus our hope on living with them. Hope for life without them now feels unrealistic. Living with constantly disappointed hope is sad and not a useful place to dwell.

I feel full of promise that we can find our way to live with the seizures. I can accept, with at least occasional grace, the constant flexibility and changing plans. I can treat the injuries from another fall with Arnica and ice, kisses and hugs. I can make our home as soft and forgiving and strong as possible. One day, even Colby’s anguished crying may find a resting place in my heart.

We have transmuted our reasons to celebrate, our very sense of what is a victory. Craig came home from a few days of work in the city and while he was gone Colby really seized a lot. Craig’s return, the girls’ and my joy at him being home, a seizure free day, the ravishing fall color out the dining room window, these are the reasons now to open the champagne. Each day is a victory. Each day we are proud of each other, grateful for each other. There is no more special occasion than today.

Recipe of things to always have in the house for instant celebrations. You never know when you will need the cheer, or when your next victory will arrive, be ready!

Cold champagne or favorite wine
Favorite cheeses
Meaty olives
Fine mustard
Crusty bread or elegant crackers
Sardine or tuna packed in olive oil

Finding the Way

Crying

Colby’s crying returned. I hear her urgent, afraid cry at four in the morning, Craig goes to soothe her. Five thirty a.m. and the crying starts. I want to pull the pillow over my head, I want to curl up and dissappear. Already, I would give anything for the crying to stop. It is not that I do not want to get up, it is not that the crying itself is so overwhelming, though it is; the root of my instant anxiety is that I know the crying continue all day, and that there is nothing I can do to soothe her.

She cries with the intensity of a collicy infant, but she is five and a half years old. There is a huge, long arc to it, there is a depth of anguish that does not match up with the thin girlish body and round, cherubic face. The sound, the tears, the duration do not add up for a child. To look at and to feel, it does not make sense. And to feel impotent to help her, that is the feeling I try to avoid for a moment, pillow over the head.

Untouched eggs, toast, yogurt, banana all on the table in a still life of attempts. Colby won’t eat or drink. We have to hold her to get her meds in her. Craig and I are like broken glass, rough and abrupt, quick to wound. He is tired and breathing in short exasperated sighs. She’s already had four seizures. I feel anger mount about everything. Every way Craig does not ask for help, every little whine from Coral, and every desperate, shouting yell from Colby.

I notice my anger and I see no way out, through or around. This will be a rough day. I start the inventory of things to remember: look out the window at the last of the fall color; pause before responding to Coral, do not snap, find the tender awareness that she is a tiny child, and then help her, hug her; remember Craig and I are on the same team, we are both wanting to find our way together, do not turn him in to the enemy. Pause and make choices before responding and reacting. The choices I feel like I have about how to be with the crying feel large, clunky and basic.

The crying comes with the seizures and the seizures mean that she has lost her motor plan and basically cannot walk. Immobility and her frustration are linked. Managing her anguish becomes the day’s focus. Even though the crying seems to have its own life cycle, of course we try everything to soothe her. We hold her, we carry her, we play her favorite music, we check for splinters, we take her for long drives.

By the end of the day I want the anesthesia of wine, I want another pillow over my head, I want to feel like there is something soft and buoyant and glowing between me and the harsh feelings and needs of the day. I notice the feeling, the desire to dissappear a little into another state, and so I watch that too.

The day ends how it started: watching. Watching my words, watching my wine, watching myself in the endless work of love and motherhood. Craig and I finally catch each others’ eyes. And we acknowledge our work, a sincere congratulation to navigating a hard day. And as Colby quiets and prepares for sleep, the hope for a better tomorrow is palpable in the house.

(Sea) Salt and (Sichuan) Pepper

"Let's talk about sex, baby..." Salt-N-Peppa, 1990

I have been talking with women friends, both with kids and without, and the absence of sex drive. My friend and I were speaking of the absence of desire itself. We both have handsome, loving husbands. It is not an issue of trust, love or looks. It is more fundamental, more physiological. To hold the initial days, years, of sexual desire and activity level as some sort of relational gold standard is not useful. We are different, new people today. We have a family, we have work, we travel, we are older, and we know each other a lot better. And the things we’ve been through. Trust has been broken and repaired, we have made impossible decisions together, we have stayed together.

Thinking about the desire conversations, I realized there are a lot of things I love that I initially do not want to do. Every time I am getting ready for a dance class, considering a morning walk, or getting ready for a riding lesson, there is a consistent wavering and I think about skipping out. Facing making dinner, having friends over, getting out of the house for a movie; there are many moments of an initial feeling of resistance to things that I really love, this window of feeling like it is all too much bother. I feel like I can do it later, that there will be a more perfect, inspired moment.

Sex and dance class, I am not comparing the activities, but rather the similar feelings of resistance and relief and joy around them both. When I do say yes to sex with my partner, I am always, always glad that I have, that we have connected. But, since having two children together, I would almost always rather do something else, something that requires less of me to show up. Like clean the house, mark things off my to do list, read, take a nap. It is not that I do not want to be with him, it is that most of the time it feels like all the other places in life that need work are more urgent. Of the two needs, the dishes or my partner, why are the dishes more important? Dishes are not more urgent or important; they are easier.

Now, to show up for this person, it is a deeper place. It is not the coy, hopeful seduction of the early days. It is not fantasy and best foot forward. It is not the merging, the becoming one of falling in love. It is not the sublime aphrodisiac of making babies. Now I see the man I have come to know. He is no longer a fantasy person who can do no wrong. It is not that sexual desire is gone, it is that the whole game has changed.

Now we both want to merge with each other, to live united and in love, and we both want to simultaneously find ourselves, explore the terrains of our psychology, our spiritual paths, and our creative lives. Oh, yes, and there are also those kids to love and raise, to clothe and feed and nurture.

I love my partner and I love it when we connect. Just like I love dance class and the euphoric feeling of freedom and endorphin rush I find there too. But I resist because I am not a ball of energy and there are multiple layers of demand in any moment. Now, I have to go deep to gear up my concentration. Arousal and desire take work, effort and concentration.

And once the work is underway, that initial step of committing to the moment, comes the awe of the reward. The spiritual depth of being held and holding another, your beloved partner. The physical hum of nerve endings tantalized by touch. The gleeful triumph of having made the time to indulge in each other, just for you. It is a luxury! How easy this is to forget. That to live with love and the promise of connection is a precious gift.

We do not have forever, that is a fact. Let us savor, even if at first we don’t want to, let us savor the person in front of us, and follow the promise of being together, for the moment.

And a little aphrodisiac to help:
Mousse Au Moka Et Poivre from Raquel Carena
1/4 tsp Sichuan peppercorns
1/3 cup heavy cream
1 1/2 tsp ground coffee beans
4 oz 70%-cacao bittersweet chocolate, chopped
3 large egg whites
1 Tbsp sugar

Grind peppercorns with mortar and pestle. Bring coffee and cream and pepper to a simmer in a small pan. Remove from heat and let steep, covered, 30 minutes. Strain cream through fine mesh sieve into a bowl, pressing on solids. Melt chocolate in a large bowl. Stir in cream. Cool slightly. Beat egg whites with sugar until they just hold stiff peaks. Fold into chocolate mixture gently but thoroughly. Spoon mousse into glasses and chill at least 3 hours.
Serve with lightly sweetened whipped cream.

Store Up the Sun

The pear tree in the back  yard is the first to show fall.  Sprinkled throughout the green are golden yellow, eyed shaped leaves. We had a cool week, lots of rain and foggy days. One morning, sitting at the outside table with Coral drinking tea, I gazed across the land at the pear tree. 

I looked at the light smattering of yellow in an otherwise still solid green landscape. The wind was blowing, but some of the yellow leaves looked like they were actually darting around. Training my eyes over the distance I slowly came to see that in with the yellow leaves were also darting yellow shapes, not leaves but bright yellow Goldfinches. As I watched it slowly came into focus: a cocaphany of thirty, fifty maybe a hundred goldfinches, too fast, too tiny and too many to count, in the tree. 

They were elated, eating with their tiny beaks the ripe pears hanging on every branch.  The yellow birds flying up and out and all around, eating the pears was beacon to the fast arriving autumn. Before the leaves fall, before the grey, white and earthen brown of winter, before the birds and bugs fly away or go to sleep, the colors dazzle us one final time. 

The birds and bugs dance and feast on the sugar and stored up sunshine in the fall fruit.  All the while, the leaves change their colors, yellow, pink, red, orange, alerting our eyes, our bodies to that arrival of cooling nights.

Air out the blankets, darn the socks, can the peaches. Learn from these tiny dancing teachers, the crickets and the goldfinches. Store up the sun. Dance one last time barefoot on the grass. Winter is coming. But now, the feast of Autumn.

Here is a recipe from Cooks Illustrated that my friend says is SO good, I will make it soon with the last of the Italian Plums appearing at the market.

Rustic Plum Cake, Published July 1, 2007
Serves 6 to 8

This recipe works best with Italian plums, which are also called prune plums. If substituting regular red or black plums, use an equal weight of plums, cut them into eighths, and stir them a few times while cooking. Arrange slices, slightly overlapped, in two rings over surface of cake. Do not use canned Italian plums. Blanched whole almonds can be used but must be processed 30 seconds longer until finely ground. The brandy can be omitted, but then you will need to melt the jam with 1 tablespoon water before adding the plums. Don’t add the leftover plum cooking liquid to the cake before baking; reserve it and serve with the finished cake or over ice cream. The cake can be served with lightly sweetened whipped cream.

Ingredients
2 tablespoons red currant jelly or seedless raspberry jam
3 tablespoons brandy
1 pound Italian prune plums (about 10 large or 14 small), halved and pitted (see note above)
3/4 cup unbleached all-purpose flour (3 3/4 ounces), plus additional for dusting pan
3/4 cup sugar (5 1/4 ounces)
1/3 cup slivered almonds (1 1/2 ounces)
1/2 teaspoon baking powder
1/4 teaspoon table salt
6 tablespoons unsalted butter , cut into 6 pieces, softened but still cool
1 large egg , room temperature
1 large egg yolk , room temperature
1 teaspoon vanilla extract
1/4 teaspoon almond extract (optional)
Confectioners' sugar for serving

Instructions
1. Cook jam and brandy in 10-inch nonstick skillet over medium heat until reduced to thick syrup, 2 to 3 minutes. Remove skillet from heat and place plums cut-side down in syrup. Return skillet to medium heat and cook until plums shed their juices and thick syrup is again formed, about 5 minutes, shaking pan to prevent plums from sticking. Cool plums in pan, about 20 minutes.

2. Adjust oven rack to middle position and heat oven to 350 degrees. Grease and flour 9-inch springform pan. Process sugar and almonds in food processor until nuts are finely ground, about 1 minute. Add flour, baking powder, and salt; pulse to combine. Add butter and pulse until mixture resembles coarse sand, about ten 1-second pulses. Add eggs, vanilla, and almond extract (if using) and process until smooth, about 5 seconds, scraping bowl once if needed (batter will be very thick and heavy).

3. Transfer batter to prepared pan; using spatula, spread batter evenly to pan edges and smooth surface. Stir plums to coat with syrup. Arrange plum halves, skin-side down, evenly over surface of batter. Bake until cake is golden brown and wooden skewer inserted into center comes out with few crumbs attached, 40 to 50 minutes. Run paring knife around sides of cake to loosen. Cool in pan on wire rack until just warm or to room temperature, at least 30 minutes. Remove cake from pan and dust with confectioners’ sugar. Cut into wedges and serve.

Love and Learn

I see now that for the first three years of Colby's life, one of an almost constant state of anxiety about her health, I saw being her mother as a severe limitation. I felt like my life was suddenly in a straightjacket of worry that would never end. As it would be in a straightjacket, I could not move my arms to embrace what was happening. I stayed clumped in my closed, afraid state, and worried. Worried about her breathing through the night. Worried about what would happen when I was no longer here to protector her. Worried about rent. Worried about how to ever find myself again within this radical new reality. The episodic and yet near constant state of emergency with the seizures was blinding. Even still, when they start up, it is almost all I can see.

Colby woke up late in the night with a cry and her seizures started up. She would miss school. Craig needed to work, I would pack the girls up and clear out of the house so he could concentrate. It was a hot day so we headed to our friends' house on the lake. As I drove into this unexpected day, Coral narrating every single thing we passed, Colby half asleep in her seat, I felt totally calm, content in the moment.

Out at our friends' Colby continued to seize. They loved her, held her on their laps, made quesadillas, hoped to get a little food in her. Coral played in the water, ate jelly beans and stayed close to my legs. After a few seizures, Colby had one that lasted a little longer than usual, she jerked more, turned blue, and made a distressing, loud gasping sound. Coral got really scared. I turned Colby's head so her airway was clear, and then I focused on Coral during Colby's postictal semi-passed out phase which lasts about a minute.

I hugged Coral and looked her in the eyes. Her worry and fear right there on her face, in her tiny knitted brow, she is just two and a half years old. And we talked. "That scary of me when Colby does that." Translation, "That scared me." "Yes baby, that is scary." "Yea." In for another hug. And then, "Maybe Colby wants a jelly bean." And in that moment, that unlikely, painful, brilliant display of child love and logic, my heart felt as big as the lake before us. I felt so, well, I felt free, emotionally free. The straightjacket, at some point in the last two years, has eased off.

Craig and I talk about the evolution of the straightjacket phase, to now feeling that being Colby and Coral's mom is not only a dream come true, but has actually made dreams come true. Long before Colby and motherhood, I had another sort of straightjacket on, one of shame, fear and self consciousness about being myself. I am and have always been an artist. To admit to that dream and claim that title, artist, writer, was an impossible risk that I did not have the strength to take.

Until I met Colby. Her strength; the child who can keep her spirits buoyant while in a hospital bed; the child who gives over to her crying, her frustration, with open howls and fat, salty tears rolling down her cheeks. She struggles to eat and play and smile even at her most neurologically overwhelmed. She is a warrior, or as our friend Toshi calls her, The Warrior Princess. In learning to care for her, to know her and love her we have all had to, been able to, become warriors ourselves. The courage necessary in mothering has opened a stream of courage into other parts of myself, my life, long repressed.

I walked in to the house, home from our day of friends, lake, jelly beans and seizures and I was actively noticing how happy I felt. I felt so happy to feel able to care for my girls. I felt happy about how Coral and I had communicated, I felt happy that we had such generous, loving friends to visit at the lake, I felt happy that I was able to be strong for Colby and that I knew just how she likes to be held after a seizure. Listening, being present with what is, opening your heart to find, with determination, the beauty and love that is everywhere, this is a deep and personal success. The straightjacket is off, arms are open wide, holding these two girls, and the worlds within them.

At the end of such a day, an instant "fast food" dinner is called for. The Fish Taco Feast is a family favorite. Learned from a doctor friend, this nourished him through medical school. This dinner takes as long as it takes to heat up fish sticks, about 15 minutes.

Fish sticks, we like Natural Sea brand Cod Fish Fillets
Corn or flour tortillas, the smaller size, not burrito size
Shredded cabbage, cilantro, sliced onion
Shriracha Mayo (See May 15 for recipe)
Plain, good quality mayo mixed with anchovies and pickles as an improv tartar sauce for the kids

You Say Soup

This most recent trip to the hospital was the very first time in the five and a half  years of Colby's life that just one of us went with her. Colby and Craig went and Coral and I stayed home. I felt confident in Craig and worried only about his sleep. I arranged for friends to visit and relieve him and provide some variation during the long days in the small hospital room.

However confident I felt at our initial decision that just he would go down, I started to reflect on the fact of that confidence more and more as the days stretched by. I felt amazed, awed by it. I feel truly, absolutely confident in my partner to take our young daughter all the way to NYC to the hospital for testing, medication changes and multiple meetings with the neurology team.  I felt totally confident that he would make the right decisions for her and for us, that he would call me, include me, be honest with me and be her absolute protector. That I, her highly involved mother, could surrender with a state of calm, almost no anxiety, was a real revelation to me about the state of trust and communication between Craig and I.

I told him how grateful I felt that such a potentially stressful time and decision felt so clear.  For all my episodic fantasies of worry, I had no core, gut anxiety.  It felt extraordinary, a large ripe fruit of our work together. I told him I loved him, and that I was grateful for him and for the family we have together.

We did not talk about it again until after our first dinner when they were finally back home.  After the kids were asleep and we were recapping all the events of our respective time, he told me how much that meant to him, that I had felt that trust and confidence and that I had communicated my feelings.  He said it sustained and nourished him and made him feel so loved.

It would have been easy for me not to communicate my love and confidence. First of all, it seemed obvious, after all, I had stayed home, that surely implied a trust. And I wasn't grilling him and micromanaging, so that also relays trust. And we were both busy, each with a kid and all our work, and there was so much to talk about with just the hospital updates, doctor meetings, Colby's withdrawal off a drug, the seizure reports. Maybe it was because it was so obvious and we talked and shared our love anyway, in such a critical time, that the message meant so much.

At a critical moment, like the hospital trust and communication are necessary. But there are the trillions of daily moments too, surprising, practical places that trust and communication smooth the way, like when we talk about what to have for dinner. 

A cool, early fall evening, I am yearning for soup. There is a Kubocha squash that needs to be cooked, some corn and potatoes. Craig asks for ideas for dinner, and I say soup. He listens. And in speaking and listening, the soup comes to be. 

Words of love and appreciation combined with his love and appreciation for my love and appreciation, and soon you have an exponential love, an expanding and blooming of love that quickly surpasses the quiet, personal and internal state of love.  The love we have when shared grows beyond our imagination. Then as that shared love is witnessed your whole life is bigger, warmer and feels, nestled in your chest, like a nourishing bowl of soup, feeding this hunger and craving for love, to love and be loved.

You Say Soup Recipe

about 2 cups of fresh cranberry beans
corn/corn cream (4 ears)
5 medium small potatoes
onions
1 medium-small Kubocha squash-oven roasted, or any rich, golden squash
chicken stock or water
celery leaves (from the heart) shredded
salt & pepper to taste
bay leaf & fresh thyme
butter
olive oil

Shell the cranberry beans, put in a pot with enough water to cover by a few inches. Add a bay leaf or two, some sprigs of thyme, a medium carrot cut into large pieces, a medium onion halved and a good glug of olive oil. Cook slowly until tender, skimming continually. You could also use chicken stock instead of water.

Cut and seed the squash. Cut into large chunks. Season with salt and pepper. Put on a baking sheet into an oven pre-heated to 425. Bake until browned and done but make sure the flesh is still firm. Remove from the oven and when cool enough to handle, remove the skin and dice about 1/2" cubes and reserve.

Meanwhile cut the potatoes into about 1/2" dice and saute in olive oil until almost done. Remove from pan, cool and reserve.

Remove the kernels from 2 ears of corn and blanch for about a minute in rapidly boiling, lightly salted water. Skim any bit that come to the surface. Cool them in cold water and rinse again. Set aside on a kitchen towel.

When the beans are tender check the broth for seasoning and adjust to taste. Add the potatoes and continue to simmer slowly.

Take the kernels off the other 2 ears of corn and put in a blender with about a tablespoon of water and puree. Strain through a chinois into a bowl, pressing gently (but not forcing) with a wooden spoon. Pour the filtered liquid into a small pot and heat over medium -low heat while whisking. When the starch in the corn begins to thicken add about 4 or 5 tablespoons of butter (in chunks) while continuing to whisk. Add the reserved blanched kernels and remove from heat. (See Thomas Keller's "The French Laundry Cookbook" for exhaustive detail on creamed corn process.)

Stir the reserved "creamed corn" into the soup. Then add the shredded celery leaves to the corn, potato, bean mixture.

To serve, ladle soup into large bowls. top each bowl with some of the roasted squash and serve. you can always add pieces of bacon or pancetta as well!

Market Love and Rabbit In a Pan

Market Love: a gratitude for the farmers, the customers, the relationship between producer and consumer, the participation in a viable, vibrant economy; a feeling of hope and of connection to place.

Walking through the market today, filled with Market Love, I was thinking about an article I'd read in the New York Times about an episode of provincialism turned violent - between two chefs - in Portland Oregon.  The chef who threw the first punch was angry because another chef had not used local meat in a cooking competition. It made me wonder about the extent of my attitudes. Do I share the adamant views of this chef, local being absolutely better? Or was my Market Love pure?

We as a family eat mostly local meat, produce, dairy and grain.  Olive oil, salt, pepper and wine are consistently from afar.  We are of these consumption habits becasue we like the discipline of it, and because it makes sense to us both physiologically and environmentally. But is it that simple? Do I really keep it that personal? Or, did I secretly want to sock people buying asparagus from Argentina in May at Wegmans, when the fields a few miles away were filled with that very crop? Apples from New Zealand in September? Thinking honestly about it, that does make me clench my jaw. Not throw a punch, but there is some emotion there, I'll admit it.

Here in Ithaca, the Farmers Market is glorious.  I love arriving, anticipating what will be fresh from the earth, filling the stalls.  I love to know, to thank and acknowledge the people who have raised the food, who have ordered the seed in January, thought out their season's flow of produce from field to market, who work long hours in the elements, raise their families and earn their living in the arduous path of independent farming. 

It has been several weeks and many markets of examining my attitudes - how alike this chef was I? - and I keep coming up with the same answer. When I invite a friend to meet us at the market and they say they did their shopping already, at the chain grocery store, I am surprised that they aren't also riveted and curious about the landscape. But rather than yelling into the phone, I invite them to dinner.

My conclusion, I do share some of the ego of this pugalistic chef. Only our touch is different.  My love and curiosity of place is genuine, and I want to share that, sweetly.  I am motivated not by a feeling of market and local being better than, but by my experience that it tastes, and feels, so, so good. Here, a complete market meal:

Rabbit In a Pan (from the great Ed Giobbi)

a rabbit 3-4 lbs
1 cup dry white wine
1/2 cup or so olive oil
4 cloves garlic chopped
1 tablespoon rosemary
salt and fresh ground pepper to taste
any combination of vegetables, pictured here is escarole, potatoes, lima beans

Cut the rabbit into serving pieces (legs, thighs, saddle...) and put the pieces in a cast iron skillet in one layer. Do not add oil! Start the rabbit on low heat, turning, until the external moisture on them evaporates. Increase heat as moisture is drawn out.

Add the other ingredients and simmer, covered, over medium heat until rabbit is tender, about 45 minutes to an hour. add more wine if pan becomes dry.
NOTE: this process seem truly bizarre, but have faith! there is a magical moment when the rabbit goes from looking dull and grey to a lovely shade of brown very near the end. it is delicious. Try to find a great source for the rabbit (or raise them your self!) Markets are a great place to find well raised rabbits.