When it was story time, she was the first to sit down on the floor in front of the teacher. She sat cross-legged, folding her hands in her lap. When the end of the storytelling neared, and her classmates fidgeted, attention waning, she sat with her hands still folded in her lap. Her eyes engaged the teller. Her brows shifted to project her connection with the the story. And when the last words were spoken, she was often the last one sitting, eager for another story.

Jordan Profile Age 7
Jordan takes time to pose at a recent family gathering. Her health continues to improve.

She was four but had the attention span of one much older. She could be very focused, particularly in the context of competition. It was this focus that aided her in studies and caught the attention of local school admission directors. Like other children in Pasadena, Jordan endured the admissions process at all the leading private schools. Her scores on standard tests were exemplary. We knew we had a child with strong learning potential and an apt intellect.

A video from a trip she and I took to Chicago provides a haunting glimpse at what she once could do. On a train ride, she chants a Halloween poem she learned in pre-school: __The Five Little Pumpkins__. She easily recalled all five verses and recited them with dramatic aplomb.

Today, Jordan can hardly sit still for more than a minute. She struggles to remember familiar sayings. When she can’t remember the exact words, she makes up her own. She tries to sing the Billy Holiday standard, __Them There Eyes__, a song she’s known since infancy because I sang it to her all the time. The line, “they sparkle, they bubble … they’re going to get you in a lot of trouble” becomes “those blue eyes are going to get you in trouble.” It’s the best she can do even after a reminder of the actual lyric.

And yet, sitting with her, it’s hard not to imagine the possibility that remains within. Behind those restless eyes lies the same intelligent child. Her vocabulary is the clue to what’s beneath. She effortlessly rattles off words like “choreograph”, “frustrating” and “astonish”. She is a studious observer, precisely identifying slight details about things she has encountered. Yet she struggles with words.

So it is that we worry about Jordan’s educational journey. After the onset of symptoms in 2004, she was dismissed from the private school where she was enrolled. We found a good public school that claimed to have excellent resources for children with learning disabilities. Though the transition to a new school was upsetting to her, Jordan adapted and bonded with her teachers. But we recently learned that the district wants to move her to another school with “better resources.”

All of the schools have been sympathetic to Jordan’s case.  Yet still I cannot help but feel betrayed. I know that my daughter is a light with much to offer the world. I don’t understand why the educators cannot see it, too. They jump to the conclusion that she was always learning-challenged. But I have evidence this is not so – in test scores, in the accounts from her early school teachers, and in video.

Most of all, I feel Jordan’s frustration and believe that I would be depressed by the challenges she faces. Watching her in action is akin to watching an alzheimer’s or dementia patient. You can tell that she knows what she wants to say, but her mind and mouth don’t seem to cooperate. Her fingers don’t allow her to write or draw what she clearly knows. She even struggles with coloring – trying over and over again to get the picture right until she usually resigns and moves on to something else.

Jeanette and I try to keep all in perspective. The battle now is to beat cancer; ensure her physical longevity and then move on to other challenges. But I worry that we are wasting the opportunity to help our daughter grow intellectually. She is ready, in her own way. Perhaps I am in denial, but I believe that with the right teacher or educational support system, she can do much more. I think she wants to do much more. She wants to learn like her brother and her peers. She wants to read. She wants to prove to herself that she can shine, like she once did. And instead of getting help to get there, she gets shuffled off to another school.

I believe that no generation is influenced by the safely predictable. Innovation and progress are driven by possibility and perseverance. Albert Einstein was considered a “slow learner”, and he may have been dyslexic. Who knows? Perhaps Jordan might one day rock the world of physics. She might choreograph a ballet, or write the great American novel, or create a new cure for cancer. She has the capacity for all these things. She has the capacity to change the world … if only given a chance.