"The time you won your town the race
We chaired you through the market-place;
Man and boy stood cheering by,
And home we brought you shoulder-high.
"Today, the road all runners come,
Shoulder-high we bring you home,
And set you at your threshold down,
Townsman of a stiller town..."
Famous lines from A.E. Housman's "To an Athlete Dying Young"
One of the darkest tragedies is the impending death of a vibrant child. When a doctor diagnoses a child as terminally ill, nothing can describe the deep pain that accompanies this understanding. Although outraged, dubious, and shocked, parents are suddenly faced with the need to focus their energies on something other than despair. The very sight of their beloved child in peril is sure to fill them with a confusing mix of emotions -- immense grief and panic and sadness and joy and love.
All parents understand "this" isn't supposed to happen. Parents are supposed to die first. Fate has turned cruel and unfair, yet parents of a terminally ill child must somehow overcome this ultimate disparity and structure the best life for their young offspring.They must do the unthinkable: they must practice parenting without a net.
Emily Rapp, a former Fulbright scholar and graduate of Harvard Divinity School, is currently a professor of creative writing and literature at the Santa Fe University of Art and Design and a faculty member in the University of California-Riverside MFA Program. Her writing has appeared in Slate, Salon, and the New York Times
Like all mothers, Emily had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education.
But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. In her own words, here is Emily's recollection of the heartbreaking scene:
"'He has cherry-red spots on the backs of his retinas,' the doctor continued. 'I've only seen this one other time in fifteen years of practice. It's Tay-Sachs.' He paused. 'I am so sorry.'
"'Well, what can we do about it?'" Rick asked, glancing between me and Ronan and the doctor, digging in the diaper bag for the cell phone, but I knew enough about Tay-Sachs to know that there was nothing at all for us to do and that my life, the life as a new and hopeful mother, was over.
"The doctor looked at the two of us. 'No, I'm so sorry,' he said. 'There's no way to fix it.'
"'They die,' I stuttered. I had the sensation of skin falling away from bone. I hugged Ronan more tightly. 'They. Die.' I wanted to vomit, and my grip on Ronan was scaring him. I loosened my arms slightly.
"'What?' Rick asked. 'Surely--'
"'They die,' I said firmly in a high-pitched voice, and this time he understood that I meant Ronan, that Ronan--our boy, our baby, our child--would die. The world was broken, and the three of us--Ronan, Rick and I--were falling into its mouth."
(Emily Rapp, "Ronan's Diagnosis," The Blog, Huffington Post, March 10 2013)
Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They had to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.
So, in an attempt to find some harmony with ill fortune, Emily began to explore her topsy-turvy feelings. She explains why she chose to do so...
"Grief is the ultimate emotional chaos -- it's a full body experience and there's no way to numb it, erase it, get out of it. In a sense, writing about grief externalized the experience. I could examine it objectively, smell it, taste it, throw it around. And I was angry, and asking questions in written form helped me manage that rage."
"Lewis and Shelly and Plath have always been touchstones for me, so it's no mistake that they helped me manage this experience as well. Part of what helped me manage my grief experience was to make my world big, and because I'm a writer and a reader, big meant vertically deep. I read and read and read—as a distraction, but also as a way of finding out how others had survived sorrow and moved on. I also found the most helpful writers to be those who were also philosophical in some way, and this fits with my background as a theologian. I was asking the biggest questions about the extremities of the human emotional experience, and I felt I needed literary guides who had done the same kind of intellectual tunneling."
As she sought answers for her questions, Rapp began the blog Little Seal to chronicle her life with Ronan and dealing with the disease. She writes in the first post...
"The narrative is empty. There is only a sense of hollowness, blackness, void, of wanting to literally crawl out of my own skin. Even this description is not sufficient. But I am a writer. I write. And just as I have written through every experience, euphoric or horrific, throughout my life, I will write my way through this, and I hope those of you who know and love Rick and me and Ronan will be a part of this record of his time here, on this blog..."
(Emily Rapp, Little Seal, January 14 2011)
In wring her "insufficient" record, Emily finds catharsis and makes new, important discoveries. When Rapp manages her own emotions, she also finds Ronan, himself, rewards her and her husband with many lessons. Although just a child, Ronan gives his parents many treasures from his brief but meaningful lifetime. Emily explains what Ronan has taught her...
"So much. He has taught me that grief has a terrible beauty because it is an expression of the depth of one's love. He has taught me that there is no use obsessing about the past or worrying about the future, but there is only the moment. He has taught me that the world is chaos, and it will reach all of us, that we have no control. That we are all mortal, and that we should love as hard as we can while we're here, even if it means experiencing gutting loss if we lose that person. He taught me that I'm not alone, and that friendships I've cultivated over years and decades are rock solid, reliable, life-sustaining."
To better understand her grief, please read Emily Rapp's piece from the opinion page of The New York Times:
Notes From a Dragon Mom
"MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
"I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
"How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
"Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
"Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
"We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
"Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
"All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
"But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
"But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
"Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
"NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
"And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
"I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
"But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."
Rapp's love for Ronan will never fade. Ronan "lives" in her being. Emily feels her immediate responsibilities as she cares for Ronan. However, she does not limit them to his living hours; rather, she feels committed to continue celebrating life and the good it brings because her child would want it that way. Rapp contends...
"My responsibility, I feel, in the wake of Ronan's raw deal, is to live the biggest, fullest, richest life possible, because he was never given the opportunity to do so.
"The human project is to love and to lose and to make meaning from this fundamental truth. I hope that people will practice a radical generosity and empathy, be more authentic, let themselves be more vulnerable and real, in public and in private."
On February 15, 2013, Ronan passed away in Sante Fe, New Mexico, where the family resides.
"Say not in grief 'he is no more' but live in thankfulness that he was."