Originally written Fall 2007
My son Aidan has always been an emotional boy prone to feeling everything to the nth degree. We call him the family barometer, an instrument capable of accurately quantifying the overall family stress level. In recent months, coincident with a visible decline in my health, Aidan decompensated several times a week, spiraling out of control despite our best efforts to avoid and contain his meltdowns. We resumed our journey through the child mental health system: a story in it’s own right.
As part of a neurocognitive evaluation, Aidan drew a picture of our house with a raging fire coming out of the chimney. Inside the house Aidan drew himself next to me. The psychologist noted how much effort Aidan had taken to draw my body but had left me without arms, something she noted may signify Aidan’s perception that I am helpless. I felt so disappointed because I have always been fiercely independent, and my own son can no longer see that in me. My husband had clearly been added to the drawing as an afterthought and only at the psychologist’s suggestion. The psychologist told us that throughout Aidan’s neurocognitive evaluation, which took place over 4 visits, he repeatedly spoke unprompted about my illness. She looked at me sympathetically, “He is so afraid of losing you. He is one scared little boy.”
“I am afraid you’re going to die,” he says to me one night as I put him to bed. How do you reassure your children when you share their very realistic fears? My forced vital capacity is 44%. I can no longer run after my kids, and I breathe heavily after climbing one flight of stairs. I left my job on disability because I can no longer lecture without dissolving into a fit of paroxysmal coughing. My weight has fallen into the low 80s. Clearly I am failing. Children are many things, but they are not blind and they are not stupid. He sees my health deteriorating just like everyone else. His 6-year old mind came drum up all sorts of worst-case scenarios while his stash of coping mechanisms offers so little at his developmental stage.
Do I lie? Do I change the subject? I have always been honest with my children. I hold steadfast to the belief that children only ask questions when they are ready to hear the honest answer. So I meet him where he is: a little boy struggling with the unfortunate reality that he has a very sick mother who may die long before he is ready to live without her.
“It sounds like you are really worried about this,” I reply. The tears pour from his eyes. “This is so hard for a little boy, isn’t it?” I nudge and he nods. I confess, “You know I am scared too. But I don’t think you need to worry about this right now.” I reassure him that I am doing everything I can to take care of myself: exercising, resting, eating right, quitting my job, and going on chemotherapy.
But I can see that he does not find any of this reassuring. “I don’t want to be without you forever,” he sobs. So I place my hand over his heart, “I will always be with you Aidan, even after I die. All I have taught you, all the memories that we have made are right here in your heart. I will always be here.” I try to convince him, and myself, that I will never truly leave this child. And I tell him that I am not his only mother and that life will always provide a mother when he needs one. “All you need to do is look for one,” I tell him assuredly because I have had so many mothers in my life. It seems to offer him only a small hope, and I don’t know what else to say.
I once caught my mother telling my daughter to pray to God to heal me. “God always answers children’s prayers” my mother assured this trusting and impressionable child while I stood-by, furious. My disease is incurable and I never want my children to feel that I succumbed because they didn’t pray hard enough. So I have never asked or encouraged them to pray for my healing. But as I sat with Aidan that night I wanted to give him something bigger than himself that he could hold on to. He is so much like me – exceptionally petite and agile, feisty and emotional, headstrong and impulsive – but he needs my strength to weather all that is to come. I don’t think that fortitude it is a trait encoded in our DNA and I don’t know how to give that to him. “You know what you could do, Aidan?” “What?” he asked, his long eyelashes damp with tears. “Pray to God and ask him to help you not to worry,” I suggested hopefully. The tension in his small shoulders finally seemed to abate. He seemed satisfied and laid his head against his Batman pillow, exhausted from his catharsis. I pulled his striped comforter up to his chin and kissed him goodnight, hoping I had passed this maternal test for which I feel desperately ill-prepared.
When I return to my room I notice his toy Superman on my bureau, its leg detached from its body. I run my finger along the rough broken surface, contemplating the weight of my son’s fears and the depth of his loss. Superman is no more alive than this plastic figurine in my hand. He is just a delusion of omnipotence craved by small boys in a big world. Such delusions shepherd us through childhood until we can accept that so much of our lives is beyond our control. The idea that a parent will always be there is perhaps the biggest but most important delusion of all. My children, alas, have never had the luxury of this particular fantasy because it has always been clear that Mommy is not well. I have tried to maintain a sense of normalcy whenever I can. I rise to make their breakfast and pack their lunches, I greet their bus and help them with their homework, I shuttle them to and from their activities, and enjoy playing board games and watching movies with them. These are my small daily victories. But my children need only contrast me with their robust father, who can coach their soccer teams and wrestle them on the floor while I stand on the actual and proverbial sidelines, to know that something is awry. I try to comfort myself with the idea that my illness and its implications have always been their reality so maybe it hurts less then if it was a loss to which they were suddenly adjusting. But they see all their friends’ moms so full of life and they know that our “normal” is far from typical. And I watch them mourn the loss of the life that they never had.
I repair Superman and he is functional albeit far from perfect. Aidan is happy to have his superhero back in action despite his imperfections. And that is how it is for us – my husband, my son, my daughter, me – happy with the life we have despite its shortcomings. It is not what any of us wanted or expected but it is the life that we know. And we hold onto it desperately. And it is sweet, perhaps sweeter than most, because we all know how quickly it can slip away.