When I was first introduced to Facebook, I was not a fan. “I hate Facebook,” I would say to my husband. “Why do I care about what someone I barely know from high school ate for dessert?” My brother and I would rant to each other about our mutual disdain. It all seemed inane and self-absorbed. Back then, it just seemed like a bunch of people saying, “Look at me!” “We took an airplane to go on vacation!” “This is my opinion about cute hamsters!”
Sometimes, I still get that same slightly angry feeling scrolling through the newsfeed.
But I will tell you, there came a time when it occurred to me that a new, very different feeling about Facebook had crept up on me: I love Facebook. And here is why - it is there where I have found a true community.
I am a member of three different Facebook groups that focus on cochlear implants – two from the perspective of parents and families, and one from the perspective of CI users themselves. We all come from very different places. Our experiences, struggles, and family dynamics are as varied as snowflakes. But we belong to one another on a plain where support, empathy, and answers are something we desperately crave. Because a lot is at stake. Planning an IEP for your deaf child is A Big Deal - it’s overwhelming and intimidating. Watching your daughter suffer through repeated migraines and wondering if they are somehow related to her implants, even though you can’t find any research on the subject, is A Big Deal. Suspecting your child’s internal device may be failing is A Big Deal. It is absolutely terrifying, for the child you love and for you. That lost feeling you have as you drive miles and miles for the third or fifth or eleventh time to do more integrity testing at the audiologist’s office, knowing you’re not likely to find the source of the problem but you have to do it anyway, while in the back of your mind is a creeping sense of dread because deep down you suspect you’re headed for another surgery. And putting your kid through surgery is almost paralyzingly scary for a mom.
I can talk to my family about these things as they happen. But they cannot share wisdom and experience they don’t have. You can – my Facebook community. My online family. You, the sweet people who offer to private message me from as far away as Florida, New Zealand, the United Arab Emirates.
When Grace was identified with a profound hearing loss, I was lucky to find a lot of support in DC. But what I did not have when Grace was a baby was Facebook. A place to go for immediate, targeted crowd-sourcing with questions about battery life, or to vent after a frustrating speech therapy session, or to be gifted with supportive words and pragmatic suggestions to help a kid who felt left out at the swimming pool. That is why I love this community. We get help here. Real help. And we have the opportunity to help others.
Since the time I was pregnant with Grace, I have subscribed to a listserv called DC Urban Moms. It was a lot like a Facebook group, but in email form. You could ask local people’s opinions on specific pediatricians. Or if anyone had the contact information for that woman who’ll come to your house and cut your kids’ hair. Sometimes, flame wars would break out about parents' disciplinary choices, or whether or not it is better to work or stay home… But DC Urban Moms, like the Facebook groups I belong to, was an online community that served a great good.
Here, scrolling through the posts one day when Grace was about three years old, I came across an email from a mom, Michelle, whose son had recently been diagnosed with hearing loss. A rush of remembered feelings and empathy for this woman I’d never met swept through me. I didn’t know her, but I emailed her. After a few exchanges, I invited Michelle over. We began to build a friendship. Then, a year or two later, Michelle noticed a DC Urban mom’s post from someone named Tina, who was struggling with her little boy’s recent deafness diagnosis. Michelle and I got in touch with her. We have all been friends ever since.
Michelle, Tina and I had lunch together a month or two ago. We sat in a noisy booth commiserating over coaches who just don’t get it, about the strange deaf culture war we still find ourselves muddling through, and all three of us suddenly realized that we were safe and warm, because we were with Our People. We had found each other online, but we were here for each other in real time, in real life.
Jason teases me sometimes when it’s late at night and I should be going to bed, but instead I’m responding to some exhausted mom’s desperate Facebook post about how impossible it is to get her deaf kid to sleep through the night.
“You hate Facebook, remember?” he smiles.
“This is important,” I tell him, “I’m helping someone. She’s one of my people.”