Having a daughter with a rare genetic disorder, many hours have been spent sitting in whitewashed rooms waiting for answers. It is now commonplace to watch professionals scour files, lab work and tests, while explaining what a ‘typical’ development looks like in comparison to our present reality. We are perpetually buried under an avalanche of information provided through endless piles of black and white. We have been immersed in another language, a meticulous one, full of abbreviations, textbook vocabulary, and medical procedures never heard of before.
Years of such experience have demanded a learning curve in efficient note taking and translation skills. And, a lot of energy simultaneously spent fighting back tears during the explanation of a prognosis—what she will and won’t be doing, what they know and don’t know…what her life will be like. Such interactions close off with the doctor’s usual last words before departure, ”So, any questions?” It is there hanging in the balance, where I’m often left disheartened and speechless, drowning in the reality that all I have are questions.
How do we hope when the odds seem set against us? What does it really take to exercise faith when the facts hurt and tempt us to give up before the battle has even begun?
I have come to understand that doctors aren’t here to make things look rosy but to tell us the ‘As Is’ situation. It is their job to operate within the world of black and white, which can be a language of harsh absolutes without much give or subsequent emotion. Now that I recognize this, I can better predict how I may feel after these appointments and make the necessary adjustments.
How do we hope when the odds seem set against us?
I leave my schedule open for the rest of the day, freeing myself from weighty demands or social engagements. I allow myself the time needed for my head and heart to process the information, positive or negative, and the many feelings attached before pushing ahead.
There is no way to build true, enduring hope upon denial. Hope takes knowledgeable action to sustain us through the deep valleys. However, there must be some way to learn how to accept the facts without allowing them to define us.
At the end of the day, it is my daughter in full flesh that stands before me, not her files. The black and white may be what the doctors have been given to work with, but I base my valid assessment on the daily interaction with the unique and abundantly loved individual she is. As her mom, it is my job to operate prayerfully within a world of hope for the child I know in ways the doctors do not. I may have wobbly knees, but my feet stand firm in faith.