Both boys have bilateral mild to moderate high frequency sensorineural hearing loss. Ezra since birth, and Isaac probably since around age three or four. What does that mean? To varying degrees, they cannot hear high frequency sounds in both ears, and it is irreversible. They both wear hearing aids. We don’t know why.
We’ve had genetic testing done and- amazingly- the experts cannot say that there is a genetic component to their hearing loss. This is especially surprising as my father has severe progressive hearing loss, and his sister is deaf.
Although it is a part of my life that I seldom even think of anymore, it still impacts our lives on a daily basis. I don’t have a loud voice naturally, but I cringe when I hear myself in Target.
“Isaac. IS-aac. ISAAC. ISAAAAC!!!!! Can you hear me? Do you have your hearing aids in? Are they working?!!”
I find myself treating Nora like she has hearing loss. When I hold her close I find myself trying to rest her head without her ears against me, to keep her hearing aids from whistling. But she doesn’t have any. I’ll enunciate very clearly (not a bad thing in itself) and loudly to her, before realizing she can hear my whisper. As she’s learning to talk, sometimes she makes repetitive noises from deep in her throat like Ezra did for so long, and I start to wonder. Can she not hear those sounds? Does she have hearing loss?
I’m ashamed to admit it, but sometimes I get frustrated at the boys because they can’t hear me. Like the Target example above. To be sure, they are four- and seven-year-old boys, so there are definitely times when they choose not to listen. But there are also times where they simply do not hear me. That makes me mad. You know, because it’s all about me and what I want (yeah right!).
As far as special needs go, this is an “easy” one. They are able to hear 80-90% of all speech sounds with their hearing aids in. At this point, they are both willing to wear their hearing aids all the time- although it’s been a long road to get here. With their type of hearing loss they are able to function as a “normal” hearing person; basically they haven’t learned sign language. Technology in hearing aids is advancing rapidly, so the outlook for their future is bright.
But sometimes it breaks my heart. Sometimes I wonder about when they are older and other kids aren’t so forgiving. I wish they could go through life unencumbered, able to wake up and hear the birds singing and their family talking downstairs. To someday talk quietly with their wives in bed in the early morning without “putting their ears in”. Able to hear the whispers of love that I give them as I tuck them into bed.
When Nora was born, they took her off for her hearing test in the middle of the night, while I was alone. As time progressed, my chest began to feel heavy. The familiar feeling of anxiety stole over me. My mind raced, my skin flushed, and the sweating began. “What if …” And then the poor unsuspecting nurse brought her back and told me that everything looked great, she could hear just fine. And the tears came pouring down. I couldn’t speak. The bewildered woman waited until I could tell her that I was just so relieved, her two brothers had hearing loss and I haven’t even realized how worried I was about it until she went for that hearing test.
Someday when they meet their Savior, the boys will be whole, with perfect ears and bodies. But for now we will live with hearing loss.