"I wish I had better news...."
One year ago today, we were told our son was deaf. I can't believe it has been a year....
A few weeks before, we had brought AJ in for an MRI, so we were familiar with the procedures in Day Surgery, etc. Due to major miscommunication between AJ's first ENT and the scheduling staff, his ABR test was done last minute. I brought AJ by myself. AJ was given his "joy juice" and was rolled out to begin testing. I called my Mom-she was at the hospital with my Dad. I remember talking to my Dad and looking out the window of the room. He told me everything would be fine with AJ. I asked how things were going with him and he said they were doing some more tests. Should be a short visit here, he said. AJ was already gone in testing before Jeremy arrived. He had come straight from work to meet me there. We had had a fight earlier in the day, so when he arrived there was tension. We focused on being parents and addressing the issue at hand. I shared with him that a different audiologist was doing the ABR test, as the one scheduled (who had seen him previously) had an emergency.
We knew, from the moment we got AJ in Guatemala, something was not right. We thought at first he was ignoring sounds etc. due to the loudness in the orphange. We even did the "Mr. Holland's Opus" movie scene and dropped pans on the kitchen floor. AJ didn't flinch. We had fought to get him into the audiology clinic and succeeded, only to have him fail every test. We were told, FLUID. Sound familiar anyone?! He probably has fluid in his ears, so lets get that checked out. Our insurance required us to go to a general ENT (grrrrrr) who placed AJ's first set of ear tubes. No fluid found during ear tube insertion, but they put them in anyways. A few weeks later, still no fluid, the ABR was finally ordered.
A small, petite woman came into our "room" and introduced herself as the audi that had done AJ's ABR test. Whatever we had fought about earlier in the day no longer mattered. As soon as she walked in, we knew, and as a team, braced ourselves for what we were about to, ironically, hear. Her first words regarding the test, "I wish I had better news." We pushed to get the truth out of her. It was the first time of many we would say, "Don't sugarcoat it, just tell us." She finally told us AJ had no responses in either ear, that our son was deaf.
Completely deaf. She tested as far as the equipment would go up and no response.
We both responded with "ok." Where do we go from here? She began rambling about hearing aids and some books she'd give us about babies and hearing loss, and even mentioned cochlear implants briefly. She was trying so hard not to overwhelm us. The one thing she said that sticks out in our mind, "Well try hearing aids, but I will be honest, they usually don't work for his level of loss." She gave us her card and stated she'd taken ear mold impressions (at which time I thought, what are those?) and said she'd call us to set up an appointment for hearing aids. The hospital had loaners we could use.
I don't remember what happened after that. Somehow we got out of there and I must have asked Jeremy to drive AJ home, and I drove his car home. While sitting in bumper to bumper traffic on Hwy 100, I called Jeremy on his cell. I was bawling. I felt like a semi had just hit me head on. Did she really just say my son is deaf? While a parent has a gut feeling, that instinct, you still hope, and pray, that somehow you are not RIGHT. I don't remember Jeremy's response. I called my Mom and shared with her, and tried my best to fight back the tears. She was still at the hospital with my Dad. In all her worry, she said everything would be ok.
We arrived home and AJ went down fairly quickly. I pulled out the books the audi had given us at the hospital and tried to make sense of them on the couch. The only part that made sense that night was the section of paragraphs written by parents of deaf/HOH children. We called a few people to share the test results, all the while keeping our feelings hidden. We didn't talk much, we just sort of sat on the couch and "existed". We may have known he had "A" hearing loss, but I don't think we expected her to say he couldn't hear anything.
I couldn't tell you how we grieved, our when we did it, but we did. I can tell you that while people constantly tried to diminish our loss of our son's hearing, we felt that loss everyday.
Here we are, a year later, on the road to cochlear implants. How blessed are we to live in a world with such technology that is going to allow my son to hear?! While the road has not been easy, by any means. It is what we know. We know NO DIFFERENT.
I am now educated about a culture I really had no idea about before AJ was diagnosed. We are learning a new language, sign language. We had always planned on teaching AJ spanish, making him bilingual. Well, now he'll still be bilingual, with english and sign language as his two languages. I know so many acronyms, it makes my head spin. I know how to read an audiogram, what a booth testing is, what an ABR is, what dBs and frequencies are, how sound is conducted through natural hearing, and how it works with an implant. I can put AJ's hearing aids in with ease. A whole new world in just a year. I wasn't sure how I'd feel when this day came, but in all honestly, I'm ok.