Days like last Friday are difficult and disappointing days. They remind me that we’ve only just begun this journey with Apert Syndrome – the mysterious and elusive phantom that I desperately attempt to grasp and yet never can quite catch.
Sarah has been consistently failing her hearing tests in her right ear. More accurately, she shows a significant delay in responding to sounds in her right ear. Last year, she had an ABR that determined she was able to neurologically process appropriate sounds for speech and language in both ears, and yet her right ear has, since her birth, shown a considerable weakness in response to noises, words, and sounds.
Last month, Sarah had her fifth surgery – fifth of an indeterminate number of surgeries. This one was a routine, outpatient surgery to remove her adenoids and insert ear tubes for better drainage. So far, the tubes are working beautifully, and Sarah isn’t as stuffy as she was prior to this most recent surgery. So we are happy with the procedure itself and its intended consequences that we have, so far, recognized.
What’s discouraging is that we very well may be embarking on something entirely new with Sarah’s apparent hearing impairment. All sorts of emotions swarm in my head after a failed hearing test: What now? What next? What if she needs hearing aids? Cochlear implants? More exams and x-rays of her inner ear? Possible corrective surgeries? Speech therapy?
I know it’s counterproductive and only feeds that feeling in the abyss of my stomach – that sinking, oppressive lump that tells me we’ve entered yet another struggle, one that few others will ever understand or even ask us about. It’s that probability of struggling alone that tugs at my heart and sinks my spirits.
I know the truth of St. Julian of Norwich: “All is well, and all is well, and all manner of things shall be well.” I think of it in moments like these, when I’m told Sarah will need to repeat the dreaded ABR. I’m awaiting the day when we learn that Sarah will need something more as a result of these constant diagnostic tests.
It always ends up being something more.
More strength that’s required of us. More faith in times of impossibility. More swapping fears for hope, peace, even joy. More anxieties. Sleeplessness. Strain on our marriage and family. More medical bills that we cannot pay. God keeps stretching us, requesting more of us.
In turn, I have less energy, less time for friends and family – even small occasions of enjoyment, less emotional reserve for one more crisis, one more letdown, one more disappointment. The more God draws me into this enigmatic realm of questions with no answers, the less I have to offer – anyone.
I am learning that this is what it means to be empty. It is the draining of my energy, time, and expectations of a normal life that dries me to bone weariness. And the dry bones thirst for the Living Water. This is a place only God can fill, because I have nothing left to give, except my heart.
I cannot lose faith. I cannot permit my peace to be shaken in this darkness. Life must be lived fully, despite the circumstances, and I readily convince myself this is true. Still, this truth does not eliminate or alleviate the pain I experience in the darkness.
Apert Syndrome indeed is a ghost I must stop chasing, because I will never have all the answers to my interminable questions about it in this life. I cannot face it entirely. I must instead approach it gingerly, deliberately, wisely. Only then can we tackle each unexpected twist and turn with authentic openness to God’s leading, even if He leads us where we do not wish to go.
Text Copyright 2015 Jeannie Ewing, all rights reserved.
Image Copyright “Ear Sculpture” (2014) by falco on Pixabay and edited in Canva by Jeannie Ewing.