It’s been a minute since I’ve sat down to write an actual blog post about what’s on my heart. If you’re not a parent of a child with hearing loss, this may not resonate with you. But, based on a recent report, it’s projected that by 2050, 1 in 4 people will have some degree of hearing loss. That 1 in 4 could be you or someone close to you, which is why it’s important to understand the layers of hearing loss and the underlying dynamics.
As I am writing this, it is World Hearing Day. It’s something that feels a little funny to acknowledge since technically, Coop isn’t hearing. The purpose of the day is really to bring awareness to ear and hearing care, something that wouldn’t have benefitted Coop one way or another. He was born with profound sensorineural hearing loss and no amount of the right care could have reversed that. Trust me, there have been times where I wished beyond anything that it could have.
No hearing parent wants their child to be born deaf. As a hearing person, being deaf is a concept that is scary and, to be honest, is something that we feel sympathy toward. We feel as if a person who cannot hear could not possibly be getting the same level of enjoyment out of life as we do. But, as the past 18 months have taught me, that is utter bullshit and there are so many layers to hearing loss, layers I am still unraveling. I don’t think I’ll ever fully know how to categorize Coop. Is he hearing because of his implants? Is he Deaf because he does use sign? Is he deaf because he doesn’t solely use sign? He’s one of a growing number of kids who are in this gray area, who can hear with their implants and can’t without. There is no name for that group, really, no exact place of belonging, and I hope that’s not something Cooper later holds against me.
I’m typing this with tears streaming down my face due to a number of factors. There are some days where it all hits me at once, the past 18 months of this journey on playback in quick flashes — Cooper’s birth, the nurse nonchalantly mentioning he did not pass his hearing screening, the first moments I read about Waardenburg, the day we were told he had never heard anything, genetic testing coming back with no answer, being alone at his surgery because of fucking COVID, his fear on activation day, appointment after appointment after appointment.
And don’t get me wrong. I would do it 10 times over if I had to. But part of me is still very much grieving the sense of normalcy we never really got after having a child. I knew that as Cooper got older it would get both easier and harder in a sense. Easier because he is more my heart and soul than ever, because I genuinely would not change him. But harder because of comparisons, because of kids his age beginning to pass him up quickly in terms of the number of words they say and the clarity with which they say them.
It’s a constant reminder that my child is on a different path. It’s something that, as much as I don’t want it to, sends a little stab through my heart each time I hear kids his age talk. I hate admitting that because it makes it sounds as if I resent those children, and that is so not the case. It’s just a slight pang that I think I will have to learn to manage and live with. And in a way, I’m grateful because it makes me examine my feelings more in-depth and serves as a reminder of the silver linings of this path we are on.
Another factor contributing to today’s emotion is that quite honestly, I am drained. I enjoy sharing our journey so much, but I also feel so, so, so beaten down on social media lately. I know there is no way to win there. I know I willingly put myself out there. I know someone will always judge, someone will always call names, someone will always tell me how to raise my child. But if I’m being honest, I never expected sharing on social media to gain the traction it has. I’m still working through how to handle a larger-than-expected following, especially on Tiktok and Instagram. But for whatever reason, the cruel comments and messages that I have gotten this week have really gotten a solid grip on me.
I know it is not my responsibility, nor anyone else’s, to continually try to share and educate. It should be something I do because I enjoy it, not because I feel obligated. And 90 percent of the time, that is the case. But right now…right now I can’t take another stranger telling me that my child will resent me, another stranger calling me a c*** or a b****, another stranger telling me I must have drank alcohol my entire pregnancy. Sometimes I just block these people, sometimes I engage and I am snarky which is really just a defense mechanism. And trust me, I tell myself it’s my own fault and I need thicker skin.
But I’ve never had thick skin, and that’s what makes me sensitive and compassionate and empathetic and….me. That’s what makes me able to share this journey in the first place. So I guess all I can really do is remove negativity from the equation, take breaks when my mental health asks for it, and continue to share what my heart pulls me to share. I have to remind myself that the reason I do share is that I want families in the early stages of this journey to be able to see another child thriving and have it set their hearts at ease, have it prove that it’s possible for their child as well. I want to be able to offer hope and guidance and light for them, all while doing right by my son. I want him to grow up confident in his own skin and with a mother he is proud of. That’s what I need to remain focused on.
If you’ve hung in there this far on this post, thank you. I know it was quite a bit of jumbled thought and emotion, a lot of the in-between parts that I don’t share on a regular basis. My normal posts are typically more polished and thought out, but I’m a strong believer and just writing down what you feel, even when it’s messy and frustrating. And if you are in your own messy and frustrating emotions, feel free to reach out for a shoulder to lean on.