I must be a fountain of optimism. At least, that’s how people have come to know me when I speak of Jordan’s journey. At the darkest moments–when her health was most in jeopardy, when she slipped off into a coma, when her body writhed in pain and jerked in seizures–I found myself comforting others. I found myself projecting hope. I found myself lying to myself in order to sustain a veneer of vitality when every part of me ached and doubted.
I started writing this blog for practical reasons. When Jordan was in the hospital, people wanted to know how she was doing. It was too much to run through the details with each new call, too exhausting to explain what was happening. And people became so emotional that I found myself consoling others when I myself needed to grieve and make sense of a situation that made no sense at all. So, I started posting updates about Jordan. And as I wrote, I let my emotions run. Sometimes, in those early days, my emotions poured out unexpectedly and my posts were full of anger and brooding. But as I witnessed my daughter rail against the disease, how could I not write about her miraculous spirit? Readers were as charmed by her gregarious personality and take-no-prisoners attitude as I was. As seven years passed, the tenor of the updates shifted. I saved the dark thoughts for my personal journal, and blogged only about the encouraging, the testimonial, and the brave.
There are dark thoughts in my mind these days. Next week, we meet with the neurosurgeon to discuss what to do about the new tumor growing in Jordan’s spine. In preparation, I have researched everything I can find, and I have grown even more somber. To remove this tumor, the surgeon must enter her spinal cord near the 8th thoracic vertebra. If complications are met, the risks are paraplegia, further neurological deficits, or both. I have great faith in her surgeon. He is one of the best in his field. But I have no words to express how I feel when I imagine something going wrong.
When I walk around my neighborhood I pass by children who run, skip and cartwheel. I watch them attempt tricks on their scooters or ride around on their bikes. I’m embarrassed to say that sometimes I resent them. I see little girls dancing and I wish my little girl could join them. When I dream, Jordan is always dancing. Sometimes, I listen to children Jordan’s age engage in social banter and I know they never worry about slipping into a seizure, and it pushes me into delusion. I force myself to believe Jordan will one day have a life that is just as effortless and normal. But then I think about what she might have to go through again–surgery, chemotherapy, physical therapy– and I want to scream. I want to blame someone or something. I want to let the emotion run wild and I want to grasp at progress by summoning emotional outbursts. Seven years of trying to be strong frays the nerves and dulls the senses. I feel ill-prepared to go through this again. I can only imagine how Jordan feels.
It’s so important that I be strong for her and for my family. Whenever I think it would be best to just uncork the emotion and allow myself to be human, I remember that I am needed by my daughter. And crying, though certainly human and often cathartically emotional, is best saved for the shower.
I live in fear that reality is a mirage. I often wonder if I want so much for my daughter to be healthy that I see what isn’t there. I’m like the man climbing down into a pit of vipers, ignoring the obvious danger and admiring the craftsmanship of the rope ladder. I find ways to spruce up any unpleasant change in Jordan’s progress. Here’s a dose of reality. Do a search for primary diffuse leptomeningeal gliomatosis (Jordan’s cancer). Most of the case literature refers to it as “a rare, fatal neoplastic syndrome characterized by widespread infiltration of the meninges by tumor.” Now the ladder-admirer in me will spout out many facts that should ease your concern. In most cases death occurs within 24 months of onset, but Jordan has been going strong for seven years. The ladder-admirer would tell you that she is diagnosed with ‘low grade’ gliomatosis, which means that her cancer is not aggressive–a blessing, for sure, but hardly much comfort. That ladder-admirer would tell you that viper’s skin makes great shoes. I’m not sounding an alarm and I’m certainly not losing hope, but every once in awhile I spy the poisonous snakes writhing at the bottom of the well, and I sink into a listless mood. It’s unattractive and it’s self-indulgent, but it is real and the feelings must go somewhere or sometimes I think I will crack up and be useless to those who need me most.
There’s a line in Macbeth, “Give sorrow words: the grief that does not speak whispers the o’er-fraught heart and bids it break.” We are grieving the loss of Jordan’s health, once again. I believe in my daughter, and I know that she can summon miracles. She’s done it before. No matter what we learn next week, our family will rally around the girl. But today I’m allowing grief to whisper to my heart, and the words I can find are full of sorrow, fear and anxiety.