This is probably the saddest day I will post about… and the longest post. Day 5 of Joshuas Journey, November 5- A World Without Sound: The status shared is the status I posted two years ago when we are going to get everything cleared up. We left for Children’s early that morning, still in our happy, carefree world. We arrived at Children’s on Acton, signed in, went up the elevator, waited, and finally, were called back into a little, dark room. Joshua was just short of 7 weeks old. We answered question after question. Was Joshua born via C-section? No. Any problems during pregnancy? No. … No, Yes, no, no… All the answers were the answers they should have been. The lady began testing Joshua. First another OAE on which, again, he was referred. The OAE is short for OtoAccoustic Emission. Basically, it is little microphones that go into the ear that play a series of tones. They measure how much of the sounds come back, or how well the ear receives the sound. There are a number of reasons for a baby to not pass this test, including fluid. Next, she check Joshua’s ears for fluid or wax build. All looked good. She used a tympanogram to make sure there was no build up behind the ear drum, out of sight. He passed, which meant the eardrum reacted normally to the test, and there was no fluid or wax. A pass on the tympanogram isn’t a good thing when your hoping for a smaller problem. She asked if we had plans that day. Well, of course, Brian had to go to work. She said she was going to call and get us an appointment for TODAY at the main Children’s. She wanted to know if we had time… Well, no, Brian had to work. We were oblivious to the fact that anything was actually wrong. Of course, if we had known, we would have agreed in a heartbeat, but our child wasn’t deaf. Thankfully, we agreed after she said, “I really think you need to go today. It is very important.” Our appointment was so soon, we had to figure out how to navigate lunch hour traffic to make it between the two locations on time. We arrived at the clinic at Children’s. We were called into a backroom. A young blonde girl would be doing the testing. Again, question, question, question. Then, test, test, test. We did the OAE again, we did the tympanogram, we also did a bone conduction test, and an ABR. The bone conduction test helps determine between conductive and sensorineural loss. The ABR is a test that involves the patient being completely motionless in quiet environment. It measures exactly what frequencies and dB are actually heard. For a newborn, it is the most accurate way until a booth test can be performed. We tried to read the on screen audiogram, but we had no clue what anything meant. Was a circle good ? Was an X bad? (It is actually left and right btw). That was the extent of our knowledge. She told us to go ahead and change Joshua’s diaper, and she would put the machine up, and be right back to speak with us. Sure. She came back in the room, clasped her hands together, and sat down. “Your child has hearing loss.” Okay, I had researched, conductive is good, it can be fixed. Sensorineural is permanent and can’t be fixed, but there are hearing aids and something called a cochlear implant. My mind raced 90 to nothing. Brian said he knew as soon as she walked in the room. “Joshua has profound, bilateral, sensorineural hearing loss. “ And the world stopped, but the room spun. Did she just say sensorineural, wait no, that’s the kind that surgery can’t correct, she didn’t say that. “But what does that mean?” “It means that he has permanent hearing loss in both ears. He wouldn’t hear a jet plane taking off if he was right next to it.” … My life had always been the very next words I said, “But, how do we fix it?” Because, I mean, everything in my life had always been fixable. This doesn’t happen to me. Not my kid. Not my life. I need a plan to fix it. “There is nothing you can do.” “What about hearing aids, what about those things? Cochlear implants?” The words she said next are not true, and I’m not sure why we were told this. Maybe we were the first family she has ever had to tell, maybe she blanked, maybe she was freaked out by the amount of crying I was doing at this point, but she responded, “Those things usually don’t work. Do you have any other questions? Here is a box of tissues and a book with all of the things you never wanted to know.” My thought was pretty much, “This is it, there is nothing I can do, what do you mean? Never wanted to know? I never even thought about knowing, much less whether I wanted to know or not… I don’t know anyone deaf, how am I suppose to have not wanted to know when I never thought I would need to know!!!” We left that day lost with me frantically trying to call at least one person to tell them while trying to search hearing loss on my phone. Through the tears I managed to tell my mom and to somehow find on the internet and tell Brian that the girl was wrong, cochlear implants were for sensorineural hearing loss… That’s what they were made for… We lived less than 2 miles past the school for the deaf. We had to pass it on the way home. I hated it. I hated the thought that I would send my son there. I hated it… I can’t say enough how much I hated that school as we passed it, as if, it somehow had made my son “that” way. (For the record, I don’t hate the school now, I actually love it, but in the moment, I very much did) We arrived back at our house, with my Aunt Joni waiting, not knowing Joshua was deaf with us trying to explain why we were crying. My parents arrived shortly after. No one knew what to say. What do you say… The life we thought we had was over. The child we thought we had, had never heard a word we had said. I remember thinking, “I teach people’s kids to read, and I can’t even teach my own child… How will Joshua learn to read?” I thought he would never hear the bells at Christmas, listen to music, hear I love you much less say it, read a bedtime story, laugh with cousins, or even hear the rain on the roof or crunch the leaves. I will never forget the image of Brian sitting in the middle of the living room floor, crying, holding Joshua, asking why it had to be our son, his son. I didn’t think I’d ever stop holding my breath or that it would ever be okay. I never thought we’d get to a point where we didn’t live in a breath-taking pain that Joshua was deaf. Or that I would even call him deaf. This is also the day we came home from the hospital after he surgery. He promptly woke-up, vomited on both changes of clothes I brought, got home, ate his gravy biscuit, and proceeded to play as if he had never missed a beat. As I write this, Joshua danced to music on the CMAs. He asked to watch “Mick” and asked for a “drink” with words… with his voice. He also sang his ABCs and said his 123s. He even asked for me to put his bright blue ear back on when it fell off. He received a bear from our Aunt Genner the day he had surgery. He couldn’t hear it at the time, but oh how he loves to tell me to push its foot so he can listen and dance to the song it sings. Pictures: The last picture before we found out Joshua was deaf; pictures from the morning after surgery/the day we went home. #JoshuasJourneyToSound #JoshuaHearsTheWorld #BionicBoy #BionicBaby #AdvancedBionics #cochlearimplant
Posted on: Thu, 06 Nov 2014 03:45:33 +0000
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