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