Three months have passed since Jordan was diagnosed with cancer, and most people have no idea there’s anything wrong with her at all. The hair has grown back around the area of her surgery, concealing the crescent scar behind her left ear. The color has returned to her skin and her eyes are full of life. She giggles, jumps, climbs and colors, just like other kids. It is easy for all around her to dismiss reality. She seems so healthy. Even when we administer her chemotherapy before bedtime, we do it with complacency. It’s just a few pills, we think as we spoon her 60mg of temazolamide – a drug so powerful that we are cautioned to wear gloves while handling it, and the pharmacist must special order it days in advance.
An eery normalcy has crept into our lives. It sedates us with false comfort that is occasionally disturbed by bursts of reality. Our little girl is 6 years old and in kindergarten. She cannot read. Words that she once recognized on first sight are now foreign to her. Where once she could write her name plainly, now she struggles to scribble letters barely recognizable. She mistakes ‘n’ for ’d’ and ‘4’ for ‘u’, a phenomenon so strange no one seems able to explain it. Perhaps if she was not battling a brain tumor we would calm ourselves with the old adage that every child develops on their own timeline. Perhaps if we had not watched her master studies a year ago, we’d rationalize that she was just a slow learner. Instead, we are anxious and apprehensive, afraid to talk about what we observe out of fear that our worries will cement into permanent fate.
Make no mistake, Jordan is bloody brilliant. This is a child who has always read a room clairvoyantly and developed a strategy to work it in the blink of an eye. Even today, in spite of her reading issues, she has a keen ability to recall minute details of things she has observed. She processes information rapidly and operates under a logic that Socrates would have admired. But her speech center is often affected, making her sometimes sound like her tongue has taken a nap or that she might have stolen a sip of brandy. And she struggles with written words and letters.
The situation is further complicated by Jordan’s will. She was born under the sign of Leo and unbridled determination has always set her apart from other children. She can be fearless and incorrigible. She has never liked to do anything unless she could absolutely master it. She was a late walker. Despite our pleas and encouragement, when we stood her up, she’d set back down and crawl. Then, one day she stood up and started walking. We were stunned. She did the same with speech. Few words, only the basics. Then, out of the blue, she began stringing sentences together with cunning skill. She has a strong Irish pride, and that’s what worries us now. She avoids trying to do her homework or attempting to read books with us. Instead of taking her time and sounding out the letters, she just makes up sentences of her own to describe the pictures she sees. We try to slow her and focus her upon the sounds, but she avoids the subject. We cannot tell if this is a behavioral issue – more of Jordan’s desire to do things on her terms – or a symptom of her illness. And so we worry.
Like any parent, we want the best for our children. We want them to reach their highest potential and make a dent in the world. When Jordan was born, I looked into those ravenous blue eyes of hers and saw a future leader. I realize that sounds far-fetched. How could anyone look an infant in the eyes and see anything but a helpless, pink baby? I can’t explain it. She had the eyes of a leader. Her spirit was strong. And for that reason, Jeanette and I chose a name that offset Jordan’s gentle feminine frame – a strong name – a name no one would ever mistake for a willing follower. There’s no doubt my child is strong. She has battled her disease with guts and gusto. But I fear she is being lobotomized. I am often reminded that the body of a child is remarkably resilient. Specialists lecture me on the inexplicable ways in which the brain re-wires itself after injury or impediment. But these factual comforts do little to lift my spirits.
If only she would read. Such a simple thing, really. Yet, if only she would string a few words together I would sleep through the night.
My own ambition and pride color my motives. I worry that she will fall behind in school, become a special education student. I curse and mumble on about how unfair it is. Then I feel hollow for feeling shame and doubt. I pound my fist against the table out of frustration. Then I take a more resourceful tack. I spend time with Jordan, helping her do homework or reading her a book while trying to trick her into saying the printed words. She’s on to me quickly and I get no satisfaction, only more frustration. In her company I cannot help but feel that inside her pretty little head rests the whispers of God. But they are trapped there, hindered by cancer and the race of time.
This will sound silly, but my wish for the coming year is simple: let Jordan read. I suppose I should hope that her cancer shrinks by 50% or that she needs no further surgery. I’ve already reconciled with the fact that fighting her disease will take time. I have patient expectations with regard to the progress of her treatment. But I hunger for her intellectual recovery. My daughter has the potential to live up to the profound words of Queen Elizabeth I when she said “I know I have but the body of a weak and feeble woman; but I have the heart of a king, and of a king of England, too”.