Uncertainty...get-on-with-it!

After our longest spell yet between journey's to Primary Children's, we revisited today for a follow-up.  The hopes were that by January we would be able to decrease the weekly lab draws to every other week.  Last week unfortunately we had to draw labs four times in one week to adjust drug levels, and check organ function.  These toxic and then low levels are somewhat defeating and frustrating.  He is used to the pokes and not usually bothered, but come on, every other day during the last week of the term?  NOT his idea of fun.  He has worked so diligently to overcome the number of days missed and was able to earn... truly earn his good grades this term.

So proud of his incredible efforts.  

The side effects have been random and taken a bit of a frustrating emotional toll on Davis, and helpless toll on a mom.  His stoic behavior has been one for the books.  His amazing positive attitude and faith have been a source of great strength for everyone around him.  Especially felt by me, as a mother, in so many moments that were beyond my ability to ease his burden.  This is all the more tender when you see tears of confusion welling up and then fought back as the realization of more trials lie ahead fill his being.  Confusion after being told that he could hopefully begin to taper some meds as we approach the one year mark and then discussion of prolonging that time period quickly vetoed that ray of light.  It is intriguing to see him process the mature view that it could be better for him in the long run to remain on the meds just a bit longer, however, fight with the fifteen-year old that could is relative and frankly not very reassuring, and just wanting to be off the meds and done with the uncertainty of side effects creeping into the days.

Again rises the dilemma of uncertainty having the ability to provide hope or discouragement in the unknown.

Upon getting in the car, I asked if he wanted to scream, "no, I don't scream."  Concerned I told him it was okay to be mad for a moment. Grieve-it, get-over-it, get-on-with-it, so scream.  As quickly as he stated that he was mad, his demeanor regroups and his body language relaxes into his familiar tolerant, patient, enduring stature.  So after a well deserved moment of frustration Davis style, we drove home with renewed determination to continue this trek.


Those who believe they can do something and those who believe they can't are both right.

                                                                                         - Henry Ford