Moot Thoughts & Musings

A little while ago, academic blogger Laura suggested that bloggers write about their kids with disabilities, in hopes of raising awareness. I'm interested in reading what others have to say, since most of the first-hand accounts that I've come across on the internet are the sort of emotionally hysterical, made for TV movie kind of stuff, which not exactly reflective or helpful. Check back on 11D for links if you want to read more. I've been meaning to sit down and work through some of my thoughts, and this provides me a good opportunity to do so. This post isn't scientific or political, rather personal.

Ellis is only three months old, so in a sense this post is more about me than him. We are only at the beginning of the journey as Ellis's parents. We've received the diagnosis of "probably moderate-to-severe" hearing loss only weeks ago. From the beginning, I feel calm about it. But since we've had the tests and I've begun to read, I'm more confused.

First, I'm not really sure what his diagnosis is. The most recent test was tracking the brainwaves' responses to very frequencies, through the whole range of pitches, and there was no response at any level. So, I know his diagnosis is "no response." What I heard the audiologist say was, "wait and see before we can determine what the level of hearing loss is." Chris seems to remember him saying "probably moderate to severe" (on a scale from light to moderate to severe to profound). I can't imagine a "no response" resulting in only minimal hearing loss, so it's probably more. "Moderate to severe" sounds safe, like something we can work with or bad, but not the worst. I just hope there's some residual hearing.

Google is a wonderful invention. Vast amounts of information available; just enter and click. In order to sort out some of my confusion, I've googled and googled. (Don't you love how google is a noun and a verb?) I've learned a little more about hearing loss, the nature of the testing, and what's available out there to help him, but we've only barely touched the tip of what there is to know.

The most unnerving thing out there is reading other people's stories. They are always so black-and-white. They have a definitive diagnosis; a mother goes into the next room and sobs; and the child is fitted for hearing aids right then and there. I end up second-guessing our situation. Should we have a clearer diagnosis? Should Ellis have hearing aids now? Should we be doing more? Is the sit-back-and-wait advice from the audiologist okay? Should I feel more sad?

Next week a team from the Early Intervention program in our county is coming to the house to evaluate Ellis for the first time. I've been hanging on to waiting for that. I hope they'll give me all the answers to the questions I don't know how to ask. (I'm just glad we have some resources to choose from. Imagine if we were still living in New Orleans! aack!)

Emotionally, I've been calm about it all. Sure, sometimes I'm disappointed because I wonder if he'll be able to hear this or that thing, especially since music is my life. (And don't give me the 'Beethoven was deaf' line, because he wasn't born deaf. He had to hear the notes first before he could hear them in his head.) Over the month since his last test, I've gone from saying that he has hearing loss to admitting that he is deaf. They feel a lot different. And maybe hearing loss is more medically correct. Announcing to someone that our son is deaf just feels more final. This admission has probably been the biggest step for me. Chris is proud of Ellis's deafness and has embraced it from the beginning, whereas I think I secretly hope it will go away. It isn't something to be scared of, and Chris's attitude has helped me.

I don't like it when other people around us offer well-meaning comments. People offer stories about so-and-so's child who was given a bleak health diagnosis concerning this or that, and then in a year it had just resolved itself. While it's nice to know that it can happen, and it has for some people, that doesn't mean that it will happen for Ellis. God has created him to the child He wants him to be, and if that is deaf, then I will embrace it, and if later He decides to change that, while I will embrace it then, but not now. Most people around us, though, are very supportive. The old ladies at church are especially kind, persisting to get me into contact with another person who has a deaf child or sibling, offering encouragement and prayers.

Most of the time I kind of tend to forget about it. My googling comes in spurts, but usually we're just going about our day. I talk to him and sing to him. When he catches my eyes and I start smiling and talking to him, he always lights up and starts cooing back. Does he hear me? The other day when I was babbling to him, I kept my lips moving but stopped making sound. It didn't make a difference in his response. He was stilling giggling and cooing, which is so cute!

I still don't see him responding to sounds as he should. No startling. He should be turning his head towards sounds about now, and that's not happening. No distraction while he's nursing. No stopping in response to sound.

There are some positive things. The first is that we never have to worry about waking the sleeping baby with noise. We can watch a movie in the same room, talk in normal voices, drop loud things, blow dry my hair; it's great! When I'm at someone's house, I don't have to go find him a quiet corner to nap, just plop him down on a blanket in the middle of where we all are. The second is that he is our first kid, so we don't have to worry about the emotional well-being of older kids as they adjust to all the attention we'll be having to give Ellis in these early years, and I imagine it will be easier to add child(ren?) to Ellis rather than him to them.

I really don't have anything knowledgeable to offer at this point. I am at the beginning. I only have questions. I don't know how Ellis will grow up yet. Right now I'm enjoying this time we have when his needs are so basic, because soon, soon, soon, our lives will change so much more. So I just offer my hodge-podged thoughts for the moment, and that's all I have time for, because now he's waking up.