Thursday, January 29, 2015

Geneva Stands Tall

Today is such a happy day that Geneva keeps laughing, I keep crying, and neither of us can stop smiling. We’ve been waiting for this day for four years. Today is the day Geneva was liberated from her back brace! Look at her joy.

From the day she received a diagnosis of scoliosis, Geneva made up her mind that there was no point in fighting it. She never cared what anyone else thought or how she looked. Instead she embraced (hee) her predicament, artfully covered her brace in stickers and wore it proudly, all while showing the rest of us how a badass, fierce, and brave girl faces adversity.     

With the exception of her occasional grumbles about the thick plastic brace overheating her during bike rides on 100°+ days or her lamenting her difficulty in sleeping comfortably, Geneva truly never complained. And she certainly had a right to. She wore that contraption for 23 hours a day for four years. I can’t imagine wearing it for an afternoon. To celebrate, we picked up some yummy treats, rolled down the windows and blasted the music on the drive across the Causeway. When I dropped her off at her high school, I watched her practically skip off to class, so eager to share her news with friends. I noticed how much smaller she looks without her brace and wondered if she will feel exposed or unprotected until she adjusts to this new self, as she has been walking around in “armor” for years. 

Today she stands tall, figuratively and literally, with a strong backbone and great posture. She feels like Melville’s Ishmael, who proclaimed, “I rejoice in my spine, as in the firm audacious staff of that flag which I fling half out to the world.” Today, we all rejoice with her.

Sunday, January 4, 2015

Birthday Presence

Dear Jukie,

Fourteen years ago today you entered my world and changed everything. Your birth was so quick that no medical staff made it in time to help; we were on our own — just you and me in the water with your Daddy and Grammy Jo standing nearby, presumably feeling a mixture of excitement to meet you (finally!) and concern for your mommy who had no midwife to catch you. It turns out, you and I knew just what to do as I gripped the side of the tub and pushed with everything I had, and you peacefully slid into view. "He's out!" Daddy said, as I scooped you from the water and into my arms. A nurse appeared and covered us with towels. You and I stared into each other's eyes, oblivious to the sudden flurry of activity in our room. I remember silently talking to you. I was telling you, "you're here! look so much like your're mine." 

Excited for the surprise, I hadn't wanted to know your gender before you were born. But I knew you were a boy — so sure that I hadn't even thought to look. "My sweet boy," I said. Daddy and Grammy Jo laughed, "IS it a boy?" We all peeked beneath the water. Yep! A boy! Geneva had a baby brother. Daddy and I had a son. We called you Jackson, the only name we had discussed. 

Sometime during those first few months, Geneva began calling you "Jukie," and soon everyone adopted your new name. I didn't really know how to raise a boy, but I figured you'd show me the way. You were a cuddly baby who smiled early and often. We said you looked wise with your heavy-lidded Yoda eyes. You told us so much with those eyes.

On your first Thanksgiving, we received a phone call: "Smith-Lemli-Opitz Syndrome," the geneticist said. Shocked and scared, we held you tightly and wondered what this diagnosis meant for you. For us. Focus on the boy, I thought, not his new label. I knew this boy. I loved this boy. 

Every child develops at his or her own speed, but most follow the same general course. Still, parents have a hard time not comparing. For a few years of your early childhood, I felt desperate for you to keep up with your "typical" peers. But you had no peers. And you had your own timetable.

The night my grief reached its peak, I sat on the floor of my dark closet, letting out all the tears I thought would never stop. Daddy brought me a phone with a friend on the other end. She listened to me cry. She cried with me. I remembered that holding you always took away my fear. Focus on the love, I thought. Tiptoeing into your room that night, I stood over your crib and watched you sleep. I wondered where you would take us on our journey. Would you be okay? Would it all be okay? 

I couldn't have known the challenges that lay ahead. After one's child receives a frightening diagnosis, those early days (years) of denial and uncertainty serve to protect us, preventing us from overwhelming panic, allowing us the space and time necessary to cope with all that we will eventually take in. Today I have many close friends whose kids were also born with your rare syndrome. Sometimes I joke with them, "our heads would have exploded. If we had known." We laugh now. It feels good to laugh with someone who knows. When did our shared laughter surpass our shared tears? 

Mommies love to make their kids' birthdays special. Today I will spoil you with kisses. I will take you to your favorite nature playground and follow your lead. I will play your favorite music and listen to you sing along in your Jukie way. We will bake your favorite cake and try to believe it needs 14 candles. 

More than the struggles that I couldn't have anticipated we would face together, I could not have known the joy you would bring into our lives. You introduced me to a world lived in the present; you taught me that my presence is required when I'm with you. You show me how to live in the moments of connection and wonder. You're always taking in your surroundings. I follow your eyes, and together we notice the last of the leaves dropping from our backyard trees. You look up at the sky, smiling as if you're communicating with the clouds. I do the same. You take my hand to show me where you want to go. You have so much to teach us. I will follow your lead.

Happy birthday, sweet boy! I love you more than words can say.