Floating on Hope

“Too often we under estimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
~ Leo Buscaglia

As so many of us know from personal experience, the world as we know it can change in an instant. Receiving an unexpected —possibly devastating —diagnosis, the premature birth of a child, the death of a love d one, the loss of a job or relationship; all can shatter our perception of the world as we have known it. The look across a crowded room into the eyes of a stranger —who one day becomes your spouse, the sound of your child’s first cry or the feel of their tiny hand in yours; the “Hail Mary” shot that wins the big game; the potential agents of change are myriad and limitless.

This morning’s visit to Nik’s new neurologist feels very much like a life-changing experience. We have had so many frustrating visits to doctors that just don’t seem to care or understand; brilliant but, perhaps, burned out doctors with no curiosity left to enable them to see that a box can indeed have more than six sides and eight corners. Doctors who simply want to scribble an indecipherable, unpronounceable name on a pad, pat our hands with a sympathetic nod of the head, and send us on our way to deal with the consequences. We are understandably wary of things which sound too good to be true.

Our initial visit with Doctor G. (no, not that one; we hope not to see her, well, ever) lasted nearly an hour and a half. During this time, the doctor sat and actually listened to what we thought was the primary issue, why we were seeking his help. He spoke candidly with us about what he saw on Nik’s multiple MRI images done over the course of a few years; he was pleased to tell us there is nothing significantly disturbing and certainly no sign of anything progressive. We already knew that from our own readings of the radiology reports, but had never had a doctor explain to us what he actually saw on the films or what it all may mean.

He queried, he listened, and he took copious notes. He stood beside me and watched the videos on our laptop computer —all of them —and then he asked if he could get a copy of the disk so he could review them more in depth and possibly discuss them with his colleagues. He did not dismiss our questions or theories out of hand nor was he patronizing. And Nikolas, who is a very good judge of character, took to him right away —in a way he has never taken to any other neurologist. Nik clapped hands, played with Doctor G’s hair, and followed him with his eyes a great deal. Together, we were a family at ease for the first time in a very long time.

Doctor G walked with Nik and made some observations about his gait and balance which put things into a clearer view for us and gave us something concrete to work on in physical therapy. He praised us for trusting ourselves and making good choices for Nik and for providing him with the things he needs. There was never any mention of a strict educational program at a certain school which, Niksdad and I agree, would likely remediate much of Nik’s uniqueness out of him in an effort to have him “fit in.”

The subjects of tests and medications —and autism —were all discussed in depth. Doctor G made some recommendations for some ways to evaluate Nik’s apparent pain response —whether it is from seizures, headaches, or some other source —in a systematic way. He discussed the possibility of changing some of Nik’s current meds and possibly adding a new one down the road but he made it clear that it was a discussion we would have much later —not a done deal. He then asked a question I have never been asked by a medical professional in all of Nik’s life. “How do you feel about this plan?” Since I had initially raised a thought about one of Nik’s seizure meds, Doctor G suggested we could start with that change if it would eliminate a concern for us, despite his opinion that it probably wasn’t the cause. He wanted us to be comfortable with the care plan and truly wanted our input.

And if that wasn’t enough to bowl us all over and make us fall head over heels for Doctor G, he then said, “I will always tell you when I don’t know but I will also always keep looking for answers to help Nikolas.”

“Home is not where you live, but where they understand you.”
~ Christian Morgenstern

“Not only is another world possible, she is on her way. On a quiet day, I can hear her breathing.”
~ Arundhati Roy

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