As I write, today is Friday, October 27, 2017. Yesterday afternoon, at 4:08 pm, my world changed. There will now be two time periods in my life as a parent, separated by a short, panicked phone call from my wife…the first period of time was when my daughter could hear, and the second period is after she went deaf.
Perhaps, dear reader, you experienced a bit of a letdown when you read that. “Wait, no one died? She’s ok, just can’t hear? Wow, that was a bit melodramatic, don’t you think?”
To my shame, I’ve had similar thoughts as we have traveled down this road, filled with visits to doctors who seem impersonal, uncaring, content to order the next test, then move on to the next appointment in the next examination room. Brenna first began noticing she was missing things that were said in January 2017. That was when her friends started saying things like, “Hey, are you paying attention?”, then repeating themselves. She first told us about what she was experiencing in April. Initially, it was a bit of trouble with her left ear, which got worse, and in time also began affecting her right ear. We had her tested at school in August, and that test revealed extensive hearing loss in both ears, with the left ear being quite a bit worse.
She has been scared, certain that she was going deaf, and fearful of what that would be like. How would she cope? How would she continue with school? What could she do for a living? To our great excitement, she found that Mandy Harvey–the America’s Got Talent star who lost her hearing as a teenager in a short period of time–was performing in concert in just a few weeks, and we got tickets to attend a concert at Ball State University on October 28th. In tears, Brenna shared with us that she was afraid the concert might be the last thing hearing memory she would have.
At the time, I mostly felt that she was being overly dramatic; perhaps you may have felt the same after reading about the event that separated my parenting days into two eras. After all, we’ve been going to doctor appointments on an almost weekly basis since the middle of July. They keep ordering the next test…audiology, Ear-Nose-Throat, audiology again, neurologist, MRI, EKG, CT scan, blood work…and every test result came back with the exact same result: NORMAL. No indication whatsoever as to why she should not be able to hear. An ENT in South Bend wrote the words “malingering” and “psychosomatic” on his official report as to likely explanations. Through all of this, I have assumed that some doctor somewhere will think, consider, figure out something, whether by ordering the right test, talking to the right person, knowing more than the last test-reader, or by just guessing right and getting lucky. I was confident that one of two things would happen: first, that someone would figure something out, and she would be cured, or at the very least that the hearing loss would be stopped in its tracks and she would learn to live with reduced, but manageable, hearing. Second, that might lose her hearing completely, but would adjust to a new reality in time and be just fine.
That second possibility now stands starkly before us, and I write with certainty that Brenna, our smart, funny, musical 15-year-old daughter, will adjust and enjoy an amazing life. But I feel like a complete donkey for having assumed it would just be ok. Prior to yesterday afternoon, I had not really contemplated what it would be like to be deaf. I’ve thought about it, but more from an esoteric viewpoint, and as a Christ-follower, I’ve been quick to say, “Come what may, God is still on the throne, and He will use Brenna even in this.” Please hear this (ironic that we throw that phrase around, huh?): I believe this to the utmost, and not for one second do I question that my salvation has been bought by the blood of Christ, and that God’s love for me and my complete devotion to Him is forever. But I have questions, and it’s hard to see that there will ever be answers that I will find satisfying. That’s what faith is…believing when we cannot see, accepting what we would not prefer.
Brenna could hear yesterday, then she passed out and fell down a few stairs and was unconscious for maybe thirty seconds. When she came to, she was in full-blown panic because she could not hear anything. Her fears had come to fruition in an instant, a mere moment in time. I was not there at the time, but my wife called and I came flying up the driveway less than a minute later. My wife and son are processing the trauma of having seen and heard Brenna wake up to profound silence, and express her terror by screaming and clawing the carpeted floor in her anguish and fear. At the moment, I’m coping poorly. I can hear, but I don’t want to listen to music, because Brenna LOVES music, and she cannot hear it now. Always, when I’m writing or working or out for a walk, I have on a podcast, audiobook, or movie, but for now I have way too much “survivors guilt”, or whatever, to want to do so. It’s relatively quiet in my study, but I hear my typing, I hear the freezer motor humming, I hear the tick of the clock on my wall, I hear our foster kids cavorting upstairs. Brenna cannot hear any of those things. Conversing is hard, because Brenna is sitting right there with us, and we can see that she longs to know what’s going on and to participate. We will learn ASL, but for now our ability to communicate is poor. It’s trial and error, ask her to repeat what she caught, learn another way. I’m thinking about church on Sunday. Brenna will not be able to hear the message, hear and participate in the worship music, absorb and process the Sunday School lesson.
Brenna says she still wants to go to the concert, which is tomorrow, barely 48 hours after her tumble down the stairs that resulted in waking to silence. I don’t know if we will go or not, but I know Brenna was and still is very hopeful to get to meet Mandy Harvey, and share a moment with someone who experiences the same silence. If we do go, I beg God to allow her to enjoy the experience, to be able in some way to feel that she’s in the music. For myself, I will be weeping, even if I’m able to hide it in some way, as I live in the knowledge that Brenna fell barely 48 hours short of hearing the music she feared would be her last auditory memory.
We hold out hope that a miracle can happen. All tests indicate that Brenna’s hearing parts all work, that they are receiving sound waves, and that the problem seems to be in the connection somewhere. We hope and trust that things will, somehow, reconnect and her hearing will be restored, even if only a little bit. With no need to add drama beyond what is painfully obvious, it’s apparent that we live in a new world. What breaks my heart is this: that world is really only Brenna’s. I will have to learn new things, find ways to communicate and help her cope, but I can’t experience what she’s experiencing. I can visit her world, but I can’t live there. Yesterday she could hear, today she cannot.