Scoliosis- Discovery, Heartbreak and Treatment
ED: Joan is our guest writer today. Joan is my cousin. Her book and web site are in the sidebar.
Recently Joan discovered that her precious daughter had scoliosis. Below, Joan shares her tale of pain and bittersweet joy as together, mother and daughter, they fight to correct the condition.
"You'll have it off by your birthday," I told Theresa. Tears hiccupped my words. She would turn six in three weeks.
Since she couldn't look up at me with her little neck imprisoned by a brace and the rest of her torso bound into a body cast, I knelt to her level. With a resolve to match that of Scarlet fallen to her knees at Tara, I hugged her and whispered, "I swear." When I pulled back, her aged, piercing blue eyes said she would never believe my promises, never again, and accused me of a betrayal so egregious that I would never be forgiven.
Nothing had ever hurt more.
Her screams had begun an hour before when two technicians-burly men, each outweighing my daughter by two hundred pounds-stretched her forty-pound body, suspended over the floor, as if they had fought over her and had agreed to pull her apart to settle their dilemma. One grasping her feet, the other her arms, they held her there for a third and then a fourth man to do their part to add to her fear and pain. Her wide eyes stared down at the hard, cold floor of the casting room at Johns Hopkins Hospital.
Held so, her screaming soon turned to shrieks and then to that choking and wheezing sound I knew all too well. Her asthma! Oh, God. I had left her Albuterol inhaler at home. It wasn't the first time, nor the last, that I told myself I wasn't fit to be her mom.
The first was when I heard the orthopaedic surgeon say that Theresa's spinal curvature had already progressed to potentially crippling. Scoliosis had somehow crept into my child's body and I never noticed. I had bathed her countless times, touching my fingertips to that dark mole on her shoulder blade, the one that was a perfect match to the one on mine.
She had a beautiful back, I thought, like an actress in a silent movie wearing a low-backed sequined gown-elegant and regal. After today Theresa's muscles would wither away and the hump and twisting would be more painfully visible from the effects of the casting and the hard braces. But I didn't know that yet. Thank God. Superficial vanity is now the least of our worries.
"Does scoliosis run in the family?" the doctor had asked.
"I don't think so." I took another tissue from the counter beside the stainless-steel sink.
The doctor nodded and the lights behind the x-rays winked out as he pulled the films down and handed them to me.
"Well," I added, "her brother has it. He's thirteen and doesn't need any treatment for it." Or so I thought.
He nodded again without looking at me and then shuffled through papers in Theresa's folder. "So you never noticed irregularities in posture running in the family? Asymmetry? Kyphosis?"
Kyphosis means a type of hunch back. I knew that much from my frantic, late-night, Internet research.
Hunch back! I thought then. My grandfather was hunchbacked. Crippled and crooked. He looked as if he would have fallen forward if he didn't use a cane.
And asymmetry? Asymmetry's the norm in my family. And that's why I never paid mind to my daughter's growing deformity (I cringe at the word). But there are no excuses for my neglect, no other mom in the world would have let her child.
Theresa's screams began again as the orthopaedic surgeon pushed her spine straight while the burly men held her and the orthotist plastered a rigid cast, winding around and around, from the neck brace cupping her chin down to her hip bones.
The men finally lowered her feet to the floor and spoke soft words of comfort to her. They were kind men, all of them. I was glad we had come to Johns Hopkins.
"You'll have it off by your birthday," I told Theresa, daring the orthopaedic surgeon-who will, in five years, slice open her back and insert metal rods to straighten her spine-to disagree with me. He said nothing, then smiled and left the room.
Three weeks later we celebrated Theresa's sixth birthday-and the removal of her body cast. In its place was a plastic brace, hidden under her shirt. Her blue eyes shined as she blew out her candles, then scrambled down from the table, grinning, and said she had a present for me that she had made herself. It was a drawing of the two of us holding hands. "I love you Mom," it read.
She whispered in my ear, "You're a good mom."
I think of her soft words-and look at that drawing-every day.
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