I awoke at 5:00 am this morning with a few thoughts in my head. The first thought was that Josh was sleeping peacefully, free of his hearing aids (hearing aids are not worn at bedtime or naps–maybe this is obvious, but it was something I had to be told). I then scolded myself for thinking that way . . . “free of those things.” I told myself that I needed to begin to view these more positively so that Josh will accept them and view them positively. Okay, I said, I’ll get there in time. But not this morning, because you see, I am grieving, once again, the absence of “normal” hearing for Josh.
The hearing aid “kit” (more like a suitcase), came with this stethoscope -type of thing that you use to listen to the hearing aids each day so that you can apprehend any crackling or other issues. When I listened to the aids for the first time yesterday, I realized that they don’t produce “normal” hearing–the type that you and I enjoy. Instead, Josh’s sound will come to him as if he were at a school assembly and there is a mini-PA system in his ear. And I guess, it really is sort of a mini-PA system. It still makes me sad today. As I mentioned in one of my earlier posts, hearing aids don’t “correct” one’s hearing, as eye glasses can correct one’s vision. They amplify, but they don’t make perfect.
And then I realized it was raining outside. And I listened to one of my favorite sounds–the sound of rain on the roof. It always makes me feel safe and secure in my home. But not this morning. I realized that with Josh sleeping unaided, he will never wake up to the sound of rain on the roof while lying in his bed. I realized that tears were coming down my eyes. I realized that I was really grieving. And I thought I’d share it here because maybe, two years from now, someone who’s baby has just received hearing aids that day may read this blog and will grieve with me and will feel the community that I feel when I read the blogs of other parents who have been through this journey. (It’s funny, more than any other place, a blog seems to exist simultaneously in both past, present, and future–but that is a story for another day).
When I first learned of Joshua’s “potential” hearing loss (and it was just “potential” for about 7.5 months–hence the relatively late acquisition of aids for hearing loss that was identified at 2 days old through early intervention), I read a bit about how controversial cochlear implants are–not with the parents, necessarily, but with members of the Deaf culture who communicate predominantly with ASL. Many do not believe that parents should make that decision for their deaf children, I guess forcing them to exist in a oral language world. I didn’t really understand the controversy. I just thought, “of course a parent would want to choose that for his or her child.” To me, it seems like you would want your child to be able to communicate with everyone around him. At that same time, we didn’t yet know the extent of Josh’s hearing loss (and perhaps we still don’t–not yet knowing whether it is progressive). Also at that time, my daughter was living in Japan, not knowing the language spoken around her. It was so difficult for her and only became less difficult after the Japanese language descended (somewhere around January). I wouldn’t want my son to feel always like he was living in Japan, only able to communicate with those few people who spoke English (ASL in his case).
Today, however, for the first time I understand the controversy a bit more. I can see where it might be more peaceful to be in a world without sound rather than having sound come to you through a speaker. I’ve never heard what the sound that comes through a cochlear implant is like. I do understand it also is not like the true sound we hear–perhaps even more so than with a hearing aid.
In spite of my grief and these realizations, I will put Josh’s hearing aids in this morning when he wakes up and I will begin the road to having Josh exist in this spoken-language world that he lives in, just as all able-hearing babies must do. And I know, I will be grateful for these amplification devices at some point (probably when Josh says his first word). But for now, I am going to sit here and quietly grieve as I listen to the beautiful “dibble dibble dop” (here is my Dr. Seuss reference for the day) of rain on the roof, allowing for the sadness and pulling it around me like a comforting quilt. Allowing it to be all mine, for the moment. And yours, if you find this blog entry somewhere in the future and you know where I am at. You then, are welcome to share this quilt with me. We’ll grieve together. And then we’ll get up and move along and do what we need to do for our children.