A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?”
She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing.
“How was your labour?” the professor asked.
“It was protracted,” I said bluntly. “68 hours.”
“That’s probably it then. But, I could refer you on if you wish.”
“Let’s say I did take May in for further genetic testing and they found something. Would it help her now? Would that information benefit her in any way?”
“No. It probably would just give us more information.”
“Then, I’d rather we didn’t. We’d be testing her for our own curiosity. It wouldn’t be right to put May through that.”
I had another conversation with another doctor, a neurologist, three years ago after an overnight stay in a hospital to trial her with a new seizure medication. We’d been testing her for a year and a half at that point and had found no answers.
I asked him: “How long do we go on testing May? How many tests are there?”
“We could continue to test her forever,” he said. “New tests come out all the time. As doctors, we are always searching for the solution.”
“But, will it help May? If we find out?”
“Then, I’m done. I’m done testing her. I’m done putting her through this.”
Sometimes there is no answer. Sometimes life just deals you a bad hand. These doctors meant well, they really did – and it makes no rational sense. In life, we expect answers. But, the truth is they don’t always exist. There is no solution. There is only a little girl with half a brain.
People are always asking me why. Why is she crying? Why is she having seizures? Why isn’t she sleeping? The definition of unbearable should be: when you don’t know why your daughter is in pain.
More information isn’t the answer when no answer exists. It is an awful truth. But, I’ve come to think of it as the only sane approach. Acceptance isn’t about fixing the problem. It is about accepting the problem.
I could shout and scream about it. I still want to demand answers. But, in the end I hope someone will lead me back to my little girl. That she will be enough. They will take my hand and place it on her head. My little girl with half a brain, a half brained beauty. She is the answer.