Sitting on the deck, my almost-three-year-old son looked up at the moon, visible in the late-summer twilight over the ocean. “Higher,” he said, pointing at the sky. “I ’na hold it.”
“What do you want to hold?” I asked.
“Moon,” Sam said. “I ’na hold-a moon.”
As my eyes welled up, I admired his ambition and feared for it at the same time. Sam is hard-of-hearing, which means he’s not quite deaf, but he can’t hear clearly either. Since he was diagnosed last December, I have done the best I could to make sure he has all the support he needs to succeed: hearing aids, therapists, early intervention. But deep down, I still wonder if it will be enough.
I don’t doubt Sam—it isn’t that at all. He’s one of the most determined people, child or adult, I’ve ever met. He’s already made so much progress—even our conversation about the moon would not have been possible a month or two ago. He simply didn’t have the words.
When I first found out about Sam’s hearing loss, everyone from my mother to my friends tried to reassure me. “He will be fine,” they all said. They cited his stubbornness, smarts and tenacity. They told me hearing-aid technology has come so far. They told me about people they knew who were deaf or hard-of-hearing and were lawyers or teachers or held other positions of success. They told me they knew Sam would be OK.
Although I appreciated all the support, I also felt that it minimized the challenges Sam will face in his life—and that I, as his parent, will face until he is old enough to advocate for himself. Hearing aids aren’t like glasses; you don’t just put them on and you can hear perfectly. Loud environments or background noise make it hard to make out speech. Even if his aids are working optimally, he still has years of missed access to language to catch up on, so he talks more like he’s almost two than almost three.
I know I should be championing him, encouraging him, backing him up. I should believe the sky’s the limit for him, that he can accomplish anything, just like other parents believe about their kids. Sometimes I wonder if I should be so cognizant of his hearing loss—instead, maybe I should take the position that he’s no different from anyone else.
But the thing is, he is different. As his parent, I can’t live in denial about his disability—and yes, I do see it as a disability; he is missing one of his five senses, after all. Of course I never want him to feel less than anyone else because of it, but it needs to be addressed and dealt with on a constant basis. At his young age, I’m the one making the decisions for him—should we focus on speech, or sign language, or both? Should he be mainstreamed or go to a school for the deaf? What should be in his IEP?—so his hearing loss is always at the forefront of my mind.
Whenever we enter a new situation, I scan the place for any potential hearing issues like loud music, bad acoustics or white noise-producing air conditioners. I remember to speak closely and directly into his face. I encourage him to use his signs. I try to replicate at home everything he’s been taught in therapy.
I do everything I possibly can for him because I want him to succeed in life. I want him to fulfill what he is capable of, just like any parent—but I admit there is a part of me that worries he will fall through the cracks of this loud world. He has so much potential, if only I can get through to him and help him communicate.
As I stared at him staring at the moon, I thought of the scene from one of my favorite movies, It’s a Wonderful Life, in which George says he’ll lasso the moon for his love, Mary, if she wants him to. Later on, he remembers his youthful exuberance with sadness and anger, believing that he hasn’t made as much of himself as he wished to. I don’t want that for Sam. I want him to retain the confidence and happiness he has now, when he hasn’t yet realized he is different from typically-hearing kids.
But in order for him to believe he can achieve anything, I can’t project my own fears on him. I can’t let him know the constant concern I have about his future. Maybe he will be fine, as everyone has told me. Maybe he’ll make his way in the hearing world, or find his place in Deaf culture. I’ll stay behind the curtain, making sure he gets the support and services he needs, trying my hardest to make sure he faces no limits.
I will hide my worry as he enters preschool this year at a special program for deaf children. I’ll watch him go off on his school bus, feeling proud and scared at the same time. But he won’t know it—as far as he’s concerned, the moon is his for the taking.