To Test or Not To Test
Carry on or wait and see? Be patient or keep seeking? Do more? Do less? Which one? Parents are the ultimate decision makers and yet, it has only recently occurred to me to even ponder there being an option. Of course we want to know, I thought, but now I’m not so sure. To test or not to test has become a theme that is prevalent in my mind, though my divided heart drives the motion of thinking.
To test means to find answers. Knowledge is power, they say. To know the underlying condition behind Amos’ myriad of medical anomalies, none serious and fixed in a span of three surgeries. To know if the brain is slow to develop or will it be a lifelong struggle. To have a word or phrase to describe my sweet boy sounds enviable to me, but is it?
Yes, not too long ago I only knew of this route, the seeking one, a mandate in my trained brain to push for more, but then I wondered. I wondered what if Amos feels like we think he’s not good enough? What if Amos is tired of the therapy visits, the thrice daily oral motor exercises, the brushing program every two hours? Maybe we should say, “enough is enough,” and rest in the knowledge that our son is an amazing version of himself. To seek what is wrong suddenly feels like it could be wrong too.
To not test means that we accept our fate, breathe in our son as we was created, happy, funny, silly and speechless as well as a bit wobbly. I can do this, I want to do this and I do this every single second, but it is not enough, not yet and so, we persevere. The voice in my soul tells me to keep pushing, seeking, striving to understand Amos better so that he can be the best version of himself. I won’t subject him to timely and exhausting interventions if there is no possibility of benefit. To know may mean to release or to hold on; can’t you see we need direction?
I love him too much to succumb to the voice in my bed that tries to tell me to just leave him alone. While my mind has been known to play tricks on me, my soul does not yield. The urge to strive and plod on is rooted in the discernment I have been gifted. And so, we will continue. We will wage another war with our insurance company for extensive genetic testing and repeat scans. Some day we may say, “enough is enough,” and if and when we do, I can assure you that I will also say, “it is well with my soul.” Until then, we cling on to hope, move forward in courage, and look for the missing pieces to our grandest puzzle, Amos.