I am thrilled to be published in The New York Times today, talking about an issue I’m passionate about: my son and his hearing loss.
How to address hearing loss in children is very controversial, which I didn’t realize until I was faced with it in my own child. I felt overwhelmed by the pressures to use sign language, or not. I’m not here to fuel that debate or say one side or another is “right.” Truth is, every child is different and deserves to be treated that way. I do want to thank everyone who offered me guidance, even if I didn’t take your advice! Information gathering is key so that parents can make their own decisions. I just wish there was not so much internal arguing among deaf people, advocates, doctors etc — as I say in the piece, what would help families is better support for their choices, whatever they are.
I’m a perfectionist. Some may argue I’m high maintenance (I like things certain ways). As life has thrown me curveballs, like my infertility, I think I’ve become more relaxed about things. But sometimes my old self flairs up, the part that wants things, well, just so. Something I’ve known for a long time: I focus too much on what I think my life “should be.”
Last weekend, just before the weekend blizzard, LM got his hearing aids. I was hoping that he’d put them in and then realize all the sounds he was missing. He’d smile as he heard my voice clearly for the first time. I’d see that look of “a-ha” on his face.
Instead, he burst into tears.
The weekend was a challenge. Housebound, it seemed the perfect time to get him used to wearing his aids in a setting that was familiar. We had nowhere to go, nothing else to do. But LM did not cooperate. Although there were periods of relief in which he let us quietly read him a book, more often he was crying or clingy or pulling at his new ears.
OK, let’s try something different, I thought. Let’s go play in the snow.
This did not involve his hearing aids, which shouldn’t get wet. (This fact presents lots of logistical challenges, but I was trying not to think about those yet). For now, we’re just trying to get him used to them little by little at home.
Even without the hearing aids, though, going outside in the snow requires other demands be placed on LM. The result? He didn’t want his boots on. He didn’t want his hat on. He didn’t want his gloves on.
As I continued to struggle with him, I asked myself who I was doing this for. I wanted to play in the snow with him. I wanted to go sledding with him. I wanted to take cute pics of LM with the kiddie shovel I had bought for him, helping Foggy Daddy clear off the driveway.
But what did LM want? Was I trying to force him into my vision of the perfect snow day?
Eventually, LM agreed to keep everything on and I got him outside. And…he loved it. We went sledding in the backyard. We played in the snow. I felt vindicated — I wasn’t doing it just for me. I was doing it for him, too.
But the next day, I wanted to go out again, and LM wasn’t having it. He had spent the morning trying to rip out his hearing aids, and I just didn’t have another fight in me. So we spent a perfect sledding day, a perfect snow day, inside. I saw pictures online of my mom friends’ kids, all looking perfectly happy to be in their snow gear, and I felt sad.
But all this wasn’t just about sledding. It was that my life right now is just not that simple. Maybe no one’s is. But see other moms who have “easy” children who do whatever is asked of them. LM is just not like that.
And now besides dealing with his “difficult” personality, we have this whole other challenge heaped on us.
I’m tired of being strong. I just wanted life the way it “should be.” I thought that when we were finally able to have a baby, that was what I had waited for, and everything would be OK now. Life would settle into the well-traveled path that everyone else I knew seemed to be on. Our detour down that rough path was done.
But that’s not how things work, is it?
At least for me. Everyone else I know seems to have it so easy.
Or do they? What right do I have to assume others’ lives are perfect? Yes, it does seem like lots of other moms are happy with their obedient children, pregnant with their second baby, living in a big home, taking vacations to warm places and generally being happy. But do I really know what’s going on?
Foggy Daddy says I’m acting very “woe is me” lately. Maybe I am. Maybe I’m just dealing with the grieving process of what I thought my life was going to be like. I know this is valid. This is what parents of children with disabilities go through.
And just as LM’s personality doesn’t make it any easier to get him to wear his aids, my personality makes it harder for me to deal with the unexpected adjustments I must make. I try to be adaptable. But I still have this vision of the “perfect” life that I just can’t seem to shake.
Every time I think, if I can just get this part of my life under control, or that part, then things will be OK, I know I’m setting myself up for failure.
I have to learn to be OK with the messiness of life. Or at least with the messiness of my life. I have to stop comparing to some perfect ideal that I have in my head.
I have to learn to embrace my own version of perfect.
Are you a perfectionist? Do you have an idea of what your life should be, and does it upset you when things don’t go as planned?
My son has not carved a pumpkin yet and it’s October 29. I have a feeling we won’t get around to it before Halloween.
I know this doesn’t make me a bad mom. But as I drove down the road today, looking at the yellow and red leaves blowing across the street, I realized that Halloween was almost over, and I hadn’t taken time to truly relish the season.
The thing is that life with a toddler doesn’t work like that. We’ve done Halloween-themed events, but the notion of actually enjoying them as a parent is tricky — we are like the puppet masters behind our kids, making sure they are fed and clothed and clean and safe, not too cold and not too hot, not about to run into traffic or shove something in their mouth that isn’t food or trip and fall and bang their head on something. So we go to a Halloween party, or a pumpkin blaze, or a pumpkin patch, but it’s hard to really take in the moment.
And then there is the business of life. I’m still trying to figure out how to balance taking care of LM and writing part-time and keeping my house clean, while at the same time doing things I enjoy, like reading and blogging and watching TV. It sucks when the shows on your DVR end up feeling like one more chore to get through.
On top of all the normal busy-ness, the thing that been occupying my mind for the last couple of weeks and made me have less time to update this blog, has been what’s causing LM’s speech delay. Because it turns out there might be more to it than speech. He might — well, actually, likely does — have permanent hearing loss.
As I was driving on that leaf-strewn road today we were coming back from a failed non-sedated ABR test, which will tell us for sure where the hearing problem is coming from. It was a fail because LM wouldn’t sit still no matter what we offered him. Typical two-year-old, I know. So that means I have to schedule another test, this time under sedation. Yikes.
But the audiologist said that based on the information she was able to get, he does have some permanent hearing loss. An overwhelming feeling came over me, a feeling that superseded Halloween and blogging and the normal busy-ness of life. But we still went straight from the appointment to his school, where he was late for his Halloween party. I struggled to get him into his costume without crying. It all just seemed so pointless — to me. To him, Halloween is still something fun. He has no idea that he’s facing a lifelong medical issue.
I know hearing loss is not the worst diagnosis. I do know that. But anytime your child is dealing with something that could potentially make them different or not “normal,” it’s hard to accept. There are going to be lots of tests and doctors and hearing aids that aren’t covered by insurance (WTF insurance???). Maybe special schools or at least special therapy.
I walked into the classroom to see LM happily sitting at the table in his dinosaur costume eating his snacks. The other moms chatted around me. It all felt surreal. They talked about things their kids had said to them, and I couldn’t help but feel left out. LM doesn’t say a whole lot to me — because he can’t. I want him to enjoy Halloween, but does he even know what it is?
My head is still reeling. I want to be able to enjoy these everyday moments. Holidays, traditions, birthday parties, seasons. But it’s so easy to overlook them, to do them but really just go through the motions, when your to-do list of things to worry about and try to accomplish just seems to get longer and longer. I feel like I can’t keep my head above water. But I have to, for LM’s sake. I hope that no matter whether I’m able to do it myself, I can let him have special moments without worry. I need to give him that much at least.
Do you sometimes feel like life gets in the way of appreciating or enjoying life? How do you deal?