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.