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Pushing Mediocre

10 May

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”

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just Making It

17 Apr

We are home and southern Cal weather is good medicine for the weary.  The reason for my title?  Because we are just making it by the hair of our chinny, chin, chin…

Sometimes, in life, I feel (to coin a phrase from the movie The Outsiders), “Golden”.  Then there are other times.  Today, and yesterday, and the day before that (which would be Saturday), I feel I am “just making it”.  And by just making it, I mean I am pushing myself to get things done that need my attention, but am struggling with even that.  I am moving my body forward, whether it is paying a bill, following up a telephone call on behalf of our family, or responding to the many emails I have that require a response.  But all the while my brain and body want to crawl back into my cozy bed and pretend I have no-one, nor no-thing requiring my attention.  And when I say that, I am pointing the finger in my own direction as well.  For even my own need for food, drink, and bathroom is an annoyance to my ‘just making it’ condition!

The above paragraph was written by me yesterday.  Today I have discovered the culprit to my debilitating exhaustion of which I previously wrote.  In an effort to medicinally treat a self diagnosed rhinitis condition, I used a nasal spray that was given to me by who knows who, and who can even remember when!  This morning I took a closer look at the sealed pamphlet which was lurking inside the box only to discover the prevalent side effect listed (of any consequence) is, “tends to cause somnolence”.  Now I had the general idea that that particular word had roots in the drowsiness category and to confirm my suspicions, I looked it up in my handy dandy dictionary (the one I stole from my high school library back in 1985; and which I attempted to return in 1994 only to learn it was no longer the type of dictionary the library wanted to house, thereby absolving me of my adolescent crime.  Thus it has finally become legitimate in my care–at least I legitimately use it!).  Yep, my weariness was brought forth through the use of an uneducated attempt to self medicate an undiagnosed condition.  Sounds smart…good thing I’m not writing a medical advice blog because I just might also try to sell you a remedy/diagnosis from Better Homes and Gardens which for some reason was gifted to me by an anonymous source and happened to be the catalyst to my perusal of medicine cabinet options.  Go figure, I sit down to use the john and find, through intensive study and research of course, via BHG, that I am the sufferer of “hormonally onset spontaneous rhinitis”.  Whatever that means.  That was my mal-interpretation!  For I’m sure their article was presented in a manner which pointed the reader to “review the options with your allergy specialist”.  But hey, that takes too much of my time.  So I grabbed my ailment and treated it with with all the enthusiasm of a toddler and the first bite of his or her birthday cake…full steam ahead!  I know, not too clever.  Next time I’ll be sure to consult US Weekly or People magazine before medicating my new found disease.  HA!

Anyway, Cole, Piper, and I actually left San Jose on Friday afternoon and made it home in 6 and one half hours–with snow and rain on the grapevine.  The traffic conditions were optimal and the general flow of traffic was at a rate of about 90miles/hr (though I did slow down in the blizzard). 🙂

And even though Cole did not receive his magic wand effect of the returned smile he was hoping (and we were praying) for, I can tell you his balance is greatly improved and his face does seem more taught.  Which in the realm of muscular dysfunction, taught is an improvement from atrophy.  We do agree, however, that two weeks in a row is too much.  His head is welted and the inside of his mouth swollen.  He is exhausted from hotel living and lack of sleep along with the therapy.  So while he won’t be rushing any time soon to again return to such a stringent therapeutic regimen, I’m sure he will return to the clinic for a maximum of 4 consecutive days in the near future.

And now his challenge is to continue the course of exercise and muscular manipulation prescribed by the doctors; while my challenge is to stay focused on the positives of life.  And that, my friends, can be quite challenging indeed.  Especially when seeing my son discouraged, disabled, and dependent is a heartbreak I carry daily.  YET, I feel it more of a burden to “see the cup half full” when I have fallen prey to the side effects of prescription strength, though non-prescribed, nasal spray.  Thus I avow to lay off the sniffer and to again attempt an attitude of thanksgiving.  Because ‘just making it’ doesn’t really feel so good, and is definitely NOT where I wish to reside.  No more rhinitis for me, but the hormonally challenged part of the equation will most definitely have to stay.

Psalm 94:19
In the multitude of my anxieties within me,Your comforts delight my soul.

Johnny and Me

15 Apr

I will not lie, Cole is a bit discouraged.  He so wants his ability to smile returned to him, even more so than his vision. And yet the facial paralysis remains.  The doctors at the neuro-acupuncture clinic have told us that this intensive, every day treatment plan, is at its max at about two weeks, because it is just too exhausting for the patient.  We are definitely here, Cole is wiped out and feeling a bit swollen in his face.  I, too, am ready to go home.  Hotel living is ok, but like my bicycle moniker ‘Dorothy’, I feel there is “no place like home”, even with our steamy latrine.  What?  I haven’t told you of our heated toilet?  And you thought the dog was the only one around here heating things up!  Not the case…

Our first night of arrival, April 1st, we unloaded (well I did) our things, and were extremely hungry.  We happened to have in our possession a gift card for the Mexican fast food chain, “Chipotle”.  And, right at our hotel lobby door happens to be a Chipotle restaurant.  I had never tried their food before but remembered my good friends, The Nances from Bakersfield, had positive things to say about it.  Cole, on the other hand,hadn’t liked his first time try, but decided to give it another go.  Anyway, Cole’s meal didn’t work out for him so well.  The meat was to spicily seasoned and he was already too tired to eat.  Mine was fine, and I ate it without a problem.  However, my stomach gurgled all night long.

Now that night we noticed our bathroom sink didn’t really have cold water, medium temp at best.  I made a mild comment about it and then forgot it quickly.  The next morning, however, Cole and I were taking turns ridding ourselves of the Chipotle from the night before (yes, even his little taster made its mark).  When it was my turn to, again, surrender to the porcelain queen, I couldn’t help notice the steam radiating from the bowl below my tushie.  I thought to myself and then proclaimed out-loud to Cole, “My gosh, that food last night is really causing some heat!”  But then it donned on me, our toilet is flushing HOT water!

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