Those of us who were born with all of our senses in tact think nothing of how they enable us to explore and engage in the world around us. Like most things, we simply take them for granted. Take away even one portion of those amazing gifts, and I’m pretty sure it would consume most of us with concern and even fear. Because Peter has had unilateral hearing his entire life, he knows nothing different. He has never heard in “stereo”, and he has never been able to localize sound. Since he was five, Peter has worn a prosthetic ear that is very realistic. Consequently, people (including myself sometimes) often forget that he is completely deaf on his left side. Sit on his left side in a crowded restaurant, however, and you will quickly realize how difficult it is for him to communicate in a noisy environment.
Peter had ear tubes placed many times when he was a baby/toddler, and he has fortunately been able to avoid chronic ear infections. There is only one previous time I remember him having an ear infection that concerned us to the point of taking him to the ER on a Sunday. It really is frightening how much his hearing deteriorates with an infection, and, like I said, I’m thankful this has been a rare occurrence.
Last Friday night while I was packing to return home from vacation, Peter awoke in extreme distress. He couldn’t hear very well out of his “good” ear and was hysterical with fear that he was going deaf. The terror on his face was heart breaking! Once I was able to get him calmed down, I suggested that maybe he had some water in his ear from splashing in the pool or taking a shower before bed. He was not experiencing any pain from the ear, but I could tell he was terrified about waking up unable to hear.
The next morning his hearing seemed about the same, and he appeared much calmer. Peter used his headphones all day in the car, and I assumed he was hearing well enough to enjoy the videos. He was not outwardly distressed, but I now understand that he was in a constant state of worry. By late afternoon, he did break down in the car and starting crying about his fear of going deaf. We were not due to get home until later that evening, but I really wanted to ease his anxiety in any way that I could. The thought of waiting to see his pediatrician on Monday didn't seem like a good option. So after spending 14 hours in the car, Peter and I arrived home only to switch vehicles and head to the closest urgent care clinic.
Turns out that Peter did have a slight ear infection as well as some wax buildup. I felt such a huge sense of relief after taking him to the clinic. I could clearly see the stress draining from his face once the doctor told him that his hearing was going to be fine.
Witnessing the terror Peter felt over the prospect of going deaf made me think about how much stress he must always be feeling. I often use humor to help Peter cope in social situations, but the reality is that he thinks about his differences and how they impact his quality of life much more than I ever realized. In addition to his hearing loss Peter was trached and tube-fed for many years which also interrupted his senses of taste and smell. His constant need for medical interventions from birth further impacted his sense of touch (sensory system). I can’t even grasp the thought of overcoming such sensory dysfunction, and yet I have watched Peter spend countless hours in therapy working through such difficulties. I don’t believe therapy will ever replace what Peter has never had nor will it erase what was taken away due to his repeated trauma in early life. As his parent, I do feel a responsibility to acknowledge how hard he works to accomplish tasks that are more easily achieved by his peers.
Typical of Peter, he doesn’t hesitate to remind any of us about his disabilities, especially if there is potential humor involved. Last week while on vacation, Peter says to his younger brother, “How come I hear better with one ear than you do with two?!” And, when asked by the urgent care doctor if his hearing in one or both ears was bad, Peter responded in all seriousness, “Well, I only have the one.” He then looked at me with that mischievous smile I will never tire of seeing. That’s my Pete-E-Pie!