I was interviewed recently for a hearing magazine and one of the questions that they asked me was, “what would you say the greatest challenge of being a deaf mother is?”.
The first thing that came to mind was last week.
I was sitting on the bench outside of Moxie’s class with Micah and Moxie’s new speech therapist. Moxie came out and climbed into my lap and the speech therapist said, “awwwww…!!!!!” I hadn’t heard anything to say “awwwww…!!!!!” about, so I asked, “what?”. He said that Moxie said, “Mommy!” – I asked Micah if he heard it and he said yes. “Yes, Moxie said, “Mommy!” She said it just now”.
And maybe my eyes filled with tears because I didn’t hear my little girl say “Mommy” for the first time.
It’s not easy talking about the challenges of being a deaf mother, living in a hearing and oral community.
Not easy, you see because I get so sick and tired of the ‘woe is life’ posts written by parents of kids with disabilities, I feel wretched when they are crying over the hearing aids, implants or ear tubes that their child needs. I know that I swing hard on the other side, like a pendulum that is whacked and connects with the ball and then swings harder from the force of impact. I don’t want to talk about the hard stuff because I don’t want parents to read what I say and only hear the challenging parts of what I am saying. I don’t want them talking about how difficult life is going to be for their deaf kid because – OH MY GOD! Hearing aids!
I simply don’t believe that anything is ever as cut and dry as we like or want it to be. The complexities of the deaf experience are not easily articulated, not least because like all experiences, it’s not one-dimensional. Being deaf is not this awful, horrible, bone-shuddering experience – but it’s not a total ride in the park either, especially if you live with hearing people, in a community that relies on telephones and oral speech.
It’s hard, not least because you are isolated. Maybe I should use “I” statements here, since I’m really just talking about my own experience.
I am isolated. Being deaf is isolating. Think about it, and maybe even plug your ears at some point when you are in a conversation with friends. Look at their lips and try and follow what is being said. It’s just not easy, is it? It’s not their fault, it’s not my fault, it’s simply the way it is.
But it’s isolating. I can’t jump into conversations, I often lose the thread of what is being talked about. I get overwhelmed with trying to focus on what people are saying and end up spacing out which does nothing for my credibility as an interesting person who might make an interesting friend.
I have to ask people to repeat things 50 million times and that gets old, fast. I often don’t even know that I need to ask them to repeat something and that makes me look stupid, fast.
There is nothing quite like that particular brand of awkwardness that comes from responding to something incorrectly, and I’m talking about like, “hey, how are things on the farm, Meriah?” – “purple!“. Their faces have *wince* written all over it and that helps – I can at least laugh and point out the obvious, “oh, did I just say “purple” when you asked me how things are on the farm or something?”
And if they laugh too, it makes it all a little better, but there is no denying that fundamental fact: being deaf in a hearing community can be an experience in isolation.
Isolation: I try to cut through it. I am not consistent about my effort though… it goes in waves. I will attend something or other, try and participate, get completely fazed out and feel craptasticly DEAF by the end, like I just want to run home and cry and play on Facebook. Sometimes things end well, like I heard enough to connect and that makes everything enjoyable enough to want to repeat the experience.
Or not. Sometimes even if it’s enjoyable, I don’t want to repeat it – I get nervous about jinxing it, interaction being hard again, or I get nervous about the effort it takes to connect.
I feel tired before anything has even happened, and even while I want friends and I want to hang out with other women so bad that it sometimes literally drives me crazy, I just can’t face it all.
Being deaf is isolating
I’ve often worried about not being able to hear the kids in a variety of contexts. I worry also about not being able to hear what is said TO my kids. I worry about someone saying something mean to one of my children and my standing Right.There. with some vacant smile on my face, looking at the trees, unaware and clueless. And then if my kid cries (with tears or with a hurting heart), it will be up to my child to tell me what happened, and I absolutely hate that.
Oh my God, do I hate that.
So I try and focus on not worrying – I mean that hasn’t even happened (to my knowledge) and I have enough that has happened to keep me busy.
The Challenges of Being a Deaf Mother
Maybe that should be, “The Challenges of Being a Deaf Mother Who Chooses to Live Off the Grid.”
Because, let’s see. We can’t get a landline for a telephone (- they literally won’t come out here to put in the poles), video phones fall under that umbrella. I can use Facetime, yes, but only at certain times of the day (when others in our valley are not downloading or streaming videos!). But how many dental offices do business with you using Facetime?! Right. I need to use the cellphone and that’s almost exactly like those old Saturday Night Live videos of Al Franken searching for access with the antennae on his head. It’s so ridiculously and comically absurdly awful that IN REAL LIFE I feel like a skit from Candid Camera.
In a nutshell: the nitty-gritty knuckle-crackin’ stuff of being a parent who gets things done is head-bashingly hard for me.
In fact, it is to “hard” what crawling up Kilamanjaro on your knees is – which is to say: it can be done and it’s no fun. Only if you do the Kilamanjaro one, you’ll get a lot of recognition – for me and for others like me, you get a dental appointment. If you are lucky.
If I was a more “together” kind of person, would it be easier? I slept with all of my kids because I couldn’t hear them cry – I would wake up from the vibration of their crying. Deaf people asked me why I didn’t get a video monitor with a bed shaking alarm – and honestly, I never even thought such a thing existed. So there you go; it doesn’t have to be the (perhaps more difficult) way that I’ve made it.
I could have had a video monitor and I could have rigged it to a bed shaking alarm. I could rig a phone up some how (how???) and get access without it being what it is. I could get an interpreter for everything, walk around like a boss with a posse. Make my family sign in order to communicate with me. Forget about being so oral – it feels stupid anyway after you know someone has repeated something to you enough times to make their eyes twitch.
I’m at the point in the story in which I want to start stacking the positive.
I mean, my fingers are reaching for the keys in a fierce way – but for once, I just don’t want this post to be about finding the positive, about the glories of being deaf, about how great it is to live in a world of silence.
And by not writing about that right now, I’m not saying it’s not true; it is. I do love my silent world, I love how it feels soft and muted, like a hazy dream with beautiful colours. I like being able to choose to hear and I like being able to switch from one blended-watercolour-world to a sharp, crisp, focused one just by putting in and turning on my hearing aids. And I want parents of kids with disabilities to remember that – I went them to balance that with what I’m saying about the isolation.
It’s not as cut and dried as we might want it to be: as I’ve said, being deaf is not a one-dimensional experience.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.