I admit it, I am in a serious battle! The battle? Fighting mediocrity. Not for me, mind you. For my son, and for my daughter. For my son, Cole, the medicinal world wants to offer him a text book answer. My job is to not accept the pat answer, but to advocate for my son’s life, and in the process challenge the doctors who come our way to get off of the chair and investigate the options. For my daughter, the adolescent world wants to chew her up and spit her out “common”. “Common” meaning devoid of her spark, her gifts, and her standards. My job is to encourage her to rise above the robotic thinking of the teenaged mind, while providing her solid truths to keep her focused on the bigger picture–the adventure of life.
Today, Cole and I met with a neuro-opthamalogist. It was a long awaited appointment. Cole’s most significant sufferings come from the problems with his eyes. All of which are present due to the cranial nerve damage resulting from the tumor resection. In fact, because of Cole, I have learned so much about the anatomy of the eye–and how integral moisture is to its health. Our tears are paramount to the entire functionality…more accurately, the physical functionality of the eye ball itself. But let me tell you, if your physicality of the eye is impaired, guess what? So is your vision. So keeping Cole’s eyes lubricated is of great importance and him not producing tears is a real, and serious problem. Yet the only solution offered today, from the “specialist”, was to insert gold weights into the eyelid to help bring the upper lid down, thus covering more surface area of the eye, which would help hold in the artificial tears Cole uses every 15-20 minutes (in addition to the gel he uses in the morning and at at night and on breezy or windy days).
Gold eyelid weights…a pat answer. We’ve heard it before–we’ve perused the thought, the practicality of the procedure, and the risks and benefits. Been there. So I asked the doctor today, “Is that all you’ve got, really?” He looked at me a bit bewildered. Then I probed his superbly intellectual mind for possibilities. “So doctor, tell me, is Cole’s Lacrimal gland still producing tears?” His answer, “yes”. So I continue, “Then let’s explore how we, actually you because you are the one with the knowledge, the gifts, and the access, can find a way to bypass the non-functioning cranial nerve five and redirect the signal via another route. In other words, if the tears are being produced but just lacking a messenger to tell them to fill the eye, let’s find another messenger.” And since I was fired up from having a lovely cup of coffee before our appointment, and because Cole was lower than low due to exhaustion and an hour wait to see this specialist, I continued my probing… “What about accessing liquid from the salivary glands and channeling them up to the eyes? Or is there a way to utilize the flow from the naso-lacrimal duct?” (FYI: because of having such a long wait for the doctor, I was able to study the eye anatomy chart for quite some time, much to the ‘surprise’ of our specialist I’m sure!) At any rate, as I was spewing out ideas with the impetus being “hey, this is a twenty-one year old kid with his whole life ahead of him and all you’re going to offer is gold eyelid weights?”, something began to stir withing our long awaited neuro-opthamalogist. He all of a sudden had a spark in his own eye–the spark of excitement. He began to see the box in which he sat, and it was as if, simultaneous to my denouncing of it, he began to tear it down himself. The possibility of looking beyond the mediocrity of the day was stirring within him. And you know what? This story is just beginning. We are off the line, wheels are turning, engines revved and running. But as every seasoned driver knows, there are road blocks ahead. And they pose no problem. For we will meet them and challenge their presence…or at least I will, and by default, the I turns to we.
In addition to the aforementioned innovative process, the mere excitement which comes from bouncing ideas off of one another builds trust and confidence within the working party. And as a result, Cole was set up with a product that was entrusted to us in a “hush hush, closed door” type of manner. A product that usually takes quite a while to procure for patients due to its high cost and low demand. A product which could aid in the regeneration of brain to eye communication–for that, we are keeping our fingers crossed!
The final step of today’s appointment was that we were to be given instructions for a nighttime patching system. Now as we were wrapping up the already extensive meeting with the doctors (yes, we had more than one toward the end of our visit), I was given a gift. The pay off, if you will. For instead of having to endure more time in the clinic than was already invested, the specialist turned to his associate and said, “I have no doubt these two know exactly how to put it on (the patch system). I trust them; just get them the supplies.”
We are settling NOT for mediocrity, the ordinary, nor the average–which is why I must drink more coffee!
A fitting funny courtesy, “NYCitylights.wordpress.com”
living in loss and gratitude 
The Noise