In her most recent novel, Handle with Care, Jodi Picoult explores the intimate sufferings of family life, and brings into sharp focus the unique challenges of parenting a special-needs child. It also engages the reader with questions both timely and perennial: “Is all life worth living –and worth saving? If not, who should decide where to draw the line?”
Catholic social teaching has consistently proclaimed that human life is to be respected and protected from conception to natural death (CCC #2258). Consequently, to be truly pro-life is to be pro-family; to respect the dignity of life is to believe that families must be able to provide for their basic needs, and that women in crisis pregnancies must be supported in their efforts to plan for their child’s future, whether or not they choose to parent the child themselves. Only by attending to both these issues can we ever hope to permanently and completely eradicate abortion.
Special considerations arise when unborn children are diagnosed with congenital defects. Current statistics reveal, for example, that over 75% of unborn children diagnosed with Down syndrome are aborted (“Down Syndrome and Beyond” ). This condition gained national attention thanks to Sarah Palin, who pounded the campaign trail with her infant son pressed against her shoulder, his flattened profile drawing much-needed attention to the thousands of Downs children whose parents have welcomed them for the gift they are, both to their families and to the world. And yet, these parents — and their children – also face extraordinary challenges: recent medical advances make it possible for a significant percentage of Downs children to outlive fifty years and more, necessitating long-term adult care.
Handle with Care: An Overview
In Handle with Care, Picoult portrays a Catholic couple facing a different kind of challenge: their child Willow was diagnosed with Type III osteogenesis imperfecta (OI, also known as “brittle bone disease”). In the book, Willow is a precocious six-year-old whose tiny body is so fragile that a sneeze or even a hug could shatter a bone. In six years she’d suffered sixty-eight breaks – seven of them at birth.
Willow’s parents, Sean and Charlotte O’Keefe, love their daughter fiercely, and spend their lives trying to keep her safe and comfortable. But money is tight – Charlotte had given up her job as a pastry chef to tend to her daughter full-time, and her policeman father’s salary is stretched to the max. The money doesn’t cover the many things their daughter needs – special operations, treatments, and living accommodations. It adds up. Sadly, the tensions of their situation manifest themselves most profoundly in their other daughter, Amelia (Charlotte’s child through a previous relationship).
To obtain a measure of relief and financial security for their daughter, Charlotte brings a “wrongful birth” suit against her ob-gyn and former best friend, Piper, arguing that her doctor ought to have recognized what was in store, and counseled Charlotte to abort her child.
What kind of parent would do such a thing? Most parents can’t imagine it -– but then, most people never experience the daily, unrelenting, bone-wearying challenge of parenting a suffering child. While many parents of special-needs children see those children as pure gift, and find great joy in their calling, there is also an undeniable sense of loss and suffering for the whole family – parents, siblings, and even the child himself. There is no glossing over the broken dreams, for the child and for themselves; they must admit – if only to themselves, and to God – exactly what has been lost.
Learning to “Hear” The Language of Loss
One flash back scene in Handle with Care offers a poignant illustration of this. Charlotte and Sean escape a doctor’s office after hearing their unborn child’s OI prognosis. Rushing to the elevator, they encounter a mother and her teenage son. Sean recalls:
To my right was a woman about ten years older than I was, pushing one of those state-of-the-art wheelchairs with a child sprawled across is. This one was a boy in his teens, thin and angular … his tongue — thick and jellied — filled the bowl of his mouth. “Aaaaah,” the boy sang. “Aaaaah!”
His mother touched her hand to his cheek. “Yes, that’s right.”
I wondered if she really understood what he was trying to say. Was there a language of loss? Did everyone who suffered speak a different dialect?
In truth, this passage touches on one of the most profound realities of loss: The language of suffering does not always translate readily from one person to the next. All we can do is listen and encourage, and maintain the connection of community — spiritual family — to the best of our ability.
Sometimes even small gestures can mean a great deal to parents who are struggling in the trenches. On the last day of Vacation Bible School, one mother presented me with a beautiful bouquet to thank me for including her special-needs child. Little “Mikey” was paired up with a dedicated helper, and walked from station to station with the other kids, laughing and singing and giving hugs with great gusto. Frankly, I didn’t need the flowers — his presence had been gift enough. But his mother had been grateful that we made a point of including her son, and giving her a break for a few hours each day.
The special needs of children touched by adoption and foster care, who speak their own “language of loss” also present unique challenges to their parents. I’ve experienced this with my own children, who (like many foster-adopted children, who remember their first parents) continue to grieve the loss of their first family. This week at EMN I give one such example.
The prospect of having to deal with this “language of loss” overwhelms some prospective parents, who are fearful of getting involved simply because it might “hurt too much” if the child goes away. And yet, to be truly pro-life is to risk our own comfort in order to come alongside not only pregnant women, but abandoned children as well.
Lives of Courageous Joy
“Those touched most deeply by suffering have the greatest capacity for joy.” This is true no matter how our children come to us. Biological parents endure the sleep deprivation and isolation of early parenthood, to the ashes-in-the-mouth foreboding of adolescent choices gone horribly wrong. “Extraordinary parents” — those who come alongside first parents to tend to the needs of the child, whether temporarily or permanently — endure multiple losses as well: from reproductive challenges to the sobering realities of parenting traumatized children with whom they share no biological connection. Parents of special-needs children — whether that child is “home-made” or adopted — walk their own little Via Dolorosa… indefinitely.
And yet, there is also undeniable joy: The joy of rediscovering the world through your child’s eyes. Catching frogs and butterflies. Making flower crowns for the Mary statue in the garden. Building block towers. Going to Mass together, and celebrating at McDonalds when you manage to get through the whole hour relatively without disruption. Reading — and rereading — favorite childhood stories. It all comes back with a rush.
These simple joys — perhaps especially in families with special-needs children, whose dependency extends indefinitely into the future — are the currency of family life, the stuff that fills the “love banks” and keep the graces flowing in good times and bad. And in the adversity of family life, we encounter another kind of healing grace. We begin to relate to our parents — and to one another — in ways we could not before. As parents, we can empathize, and we can forgive. Where once we spoke, as St. Paul said, “as a child,” as parents we find ourselves able to converse in the language of parenthood.
Handle with Care reminds us that this language of parenthood is not without its limitations. Despite our best intentions, our noblest endeavors, we do sometimes inflict pain on those we love most. But this story also points to the resilience of family ties — how the language of loss and pain and does translate into the language of healing and forgiveness. The language of family love.