She talks endlessly in the dim auditorium as we wait for the performance to start. I look into her big blue eyes. Her enormous pupils seem determined to absorb every point of light in the room. She always drinks in everything. She's such a joyful human being, so effusive, and as I look into those eyes I wonder how she will manage to stay that way.
Depending on whom you ask, Amelia’s existence is the consequence of a poorly drawn but well-played hand, a miracle, or dumb luck. After being diagnosed with scleroderma in my late 20s, three “experts” warned my husband and me not to attempt a pregnancy. We politely thanked each of them for their advice but ultimately decided that we could not allow scleroderma to ruin our hopes of someday creating a family. Much to the nay-sayers’ surprise and our delight, our daughter was born healthy and strong on a hot June evening. I was too exhausted to feel joy at the moment of her birth, but her daddy happily paraded her through the halls to her waiting grandparents and, in their presence, she opened her eyes for the first time and they received her into their hearts. My love for her bloomed weeks later during an otherwise ordinary afternoon while she sucked on my right index finger. Something about her skinny legs sticking out of her red and white checked onesie finally melted my beleaguered postpartum heart. Since that day my love for this child has never faltered.
From that day on it was easy to love Amelia. She was a happy baby who drifted off to sleep easily though never slept for very long. Our happy infant grew into a happy toddler who lay in bed practicing new words for an hour before she called for anyone to get her. Amelia seemed to have put herself on some sort of word-of-the-day program. One morning I heard her saying “Overalls, Overalls” repeatedly as if she was determine to master the word on that particular morning. When most of her playgroup friends were putting their parents through the “No” phase, Amelia said “Yeah” to everything: every food, every activity, every command. When her little brother, Aidan, came along, she literally welcomed him with open arms after carefully preparing a blanket for him. The years rolled by and Amelia grew from a happy baby to a carefree child; at every phase she was simply a joy.
While my illness was always part of our lives, limiting some of our family activities, it was largely background noise. I endured one six-month round of chemotherapy and 4 hand surgeries when the kids were too young to notice. I learned to deal with the pain, and we muddled along like any other busy modern day family of four. Then suddenly, when Amelia was halfway between seven and eight, I noticed I was out of breath walking from my car to my office. Within a few weeks I found myself breathing harder after climbing the stairs to the second floor of our home. One night I stood naked in front of the mirror and saw the muscles between my ribs and under my collar bones contract with every breath. I avoided the two-flight jaunt to our playroom by purchasing phones with intercoms. I lost 10 of my whopping 95 pounds. My illness went from the background to center stage and quickly began to consume our lives.
As my illness worsened, my husband and I tried desperately to maintain as much normalcy as possible. But the severity of my symptoms infiltrated every aspect of my life. My most debilitating symptom is a relentless cough. I have had a cough for over 7 years. In the last 12 months, however, the cough has made the simplest of tasks difficult. I actually cough to the point of vomiting sometimes as many as 3-4 times a day. Talking worsens the cough and often I cannot read to the children, sing their lullabies, or even communicate with them. We have a family sign, a circle drawn in front of my mouth, so that I can tell everyone that I am unable to communicate. We cope. My days of dramatically reading their nighttime stories are nothing but a memory; now they read out loud to me. The kids often sing their lullabies to themselves while I rub their backs. There are upsides, the household is a lot quieter now that I can no longer yell. But my frequent inability to communicate has been very hard for me. After all, I was voted “Most Talkative” in high school. I joke that perhaps after a lifetime of talking it is finally time for me to learn how to listen. When Amelia and I walk the dogs she carries 90% of the conversation. One night she looked up at me, “I am talking too much, aren’t I?” “No,” I replied, “I cannot talk anyway and you are good company.”
The coughing episodes are remarkable in their intensity and frequency. The kids have witnessed them daily for over a year and know how to help when they occur. One night Bill was at soccer practice with Aidan and I started coughing uncontrollably. Within seconds Amelia brought me cold water, a towel, tissues, and a wet cloth that she dabbed on my forehead and neck while I worshipped the porcelain god. She cared for me with compassion and not the slightest sign of fear or self-pity. My heart broke for this poor child. While Amelia and I have occasionally discussed my illness in general terms, she has said little over the last few months. As the episode drew to a close I looked up at her, “I am so sorry that you have to watch this, Amelia.” “It’s ok, Mommy,” she said with a brave face, but the slight quiver of her lip gave her away. “You don’t have to be brave. It’s ok to be scared,” I replied. I knew she needed permission and a push to unleash her feelings. She diverted her gaze to a spot on the ceiling as the tears began to well. Then the tears fell fast and furious while her little face twisted into a grimace. She curled into a ball on the floor and rested her head on my lap.
“I don’t want you to die, Mommy.”
“I know, I know, honey. I don’t want to die either and I am doing everything I can to live. I know you’re scared and that’s ok.”
What am I supposed to say to her? I cannot tell her that I am not going to die because, quite frankly, I cannot say that with any certainty. And I don’t think lying to her serves any purpose. I continued to hold her and stroke her long blond hair. We used to fight over her refusal to cut it to a shorter style, but as I raked my hands through the strands of gold I understood her profound attachment to her lovely mane. There we remained in the bathroom, my exhausted body cradling this child who has physically outgrown my lap but emotionally needs me more than ever.
Every Disney princess, it seems, is missing one or both parents. I’m sure this satisfies some deeply rooted childhood fantasy to be free of parental control and authority. Freedom from authority appeals to the Peter Pan in all of us. Who among us doesn’t want to be free to indulge their primal desires? And the image of a helpless Snow White or Cinderella indulges our predilection for drama. But the absence of one’s mother only works as an occasionally indulged fantasy. For my daughter, the idea of life without her mother is far too real a proposition, a notion she has to push from her consciousness far too often just so she can live a normal life.
I am dying. I hope it is not a matter of how many months but how many years. When Amelia lost her two front teeth I placed a tick mark against “lost baby teeth” in my mental list of milestones that I have lived to see. But when I mentally scroll down the long list I wonder how many I will be here to witness. I took her shopping one weekend for a dress for my brother’s wedding. She was so excited to go into dressing rooms with me, zipping zippers and tying bows. She happily weighed in on each dress, the color, the cut. We had dinner together surrounded by all our bags. She grinned and gabbed up a storm over her pizza. I watched my grown up girl and savored the moment, but inside a nagging voice asked, “Who will she do this with when you're gone?” Who will zip up the prom dresses and wedding gown? How can you ever leave her?
I this race against time I have so many things left to do. I opened a savings account for her. When I took Amelia to make her first deposit, I coached her through the transaction in a stage whisper. “You did a good job,” I told her as we left the building. She took her lollipop from her mouth, “No I didn’t. You had to tell me what to say.” “How do you think I learned,” I responded, ”No one is born knowing how to deposit a check.”
The other night she and I were dancing in my cavernous bedroom. When we bought the house I joked that it would be perfect for ballroom dancing and so it is. I taught her how to rumba and tango. I played the man and taught her to follow my lead. “A dance floor is the only place you let a man have complete control, “ I half-joked, “And, even then, only if he is a very good dancer.” She clumsily tried to follow the steps. I whirled her in my arms while her long blond hair drifted through the air. My lungs cooperated so that I could breathe every perfect moment of the scene. We smiled and laughed together.
“I could leave now,” I tell my husband, “I have had a good life.” And he would let me make that choice even though it means making his life harder. He loves me that much. “You’ll be fine. You’ll find someone to love and you life will be so much easier then – with a healthy wife,” I honestly believe this to be true. “But I cannot leave them, not yet,” I say wondering if I could ever possibly be ready to leave. And I wonder at what point the thought of them witnessing my struggle to live will seem worse than their having to adjust to life without me. I am the only person who really knows them. Who else knows that my daughter prefers her oranges cold, Bonne Maman strawberry preserves, and a good foot massage? No one else has memorized her hairline or the placement of every freckle or the way the nail doesn’t quite manage to cover her big toe in the usual way. Someday I won’t have the monopoly on knowing my daughter. Perhaps then I can leave.
There are so many things that I want to teach her. So many things left to do before she’s ready for me to go, before I am ready for me to go.
But, who am I kidding? She will never be ready and neither will I.
When she was a baby, my husband used to fly Amelia around the room. “Look what I found,” he would exclaim, “I found an angel.” It sounded like hyperbole but it wasn’t, at least not to my ears. It was the truest statement I had ever heard. In my darker moments I contemplate the many ideas about what lies beyond this life. When I first became ill, I dissolved into a fit of tears whenever I entered a religious sanctuary of any kind. On a hot summer’s day I stood in the barren mission in Sonoma, a deluge of tears rolling from my cheeks onto my increasingly damp t-shirt. At the time I was feeling abandoned by the God that I had been taught to trust by my mother and the nuns that figured so prominently in my childhood. But now I cry in church because my time on earth is drawing to a close and I cannot bear the idea of heaven with God and the seraphim and cherubim. I don’t want that heaven. All I want is the heaven I already inhabit here with the angel I already have.