Over the months following his diagnosis, I learned more than I thought possible in such a short time frame. I learned about the technical aspects of hearing loss, yes. But it was more than that. Being Cooper’s mom, even for just five short months, has already opened my eyes to view the world in a new light. Having a deaf baby has taught me more than I could imagine.
At first, having a deaf baby made it difficult to breathe, to function. I wanted to wake up and realize it had all been a dream. Of course, that never happened. His diagnosis was very real.
Most of all, it’s taught me that a hearing loss diagnosis doesn’t have to be the end of the world. In fact, it can be the start of a new world. Here are a few key takeaways from this journey so far.
Early on in Cooper’s diagnosis, I felt guilty when I was struggling to get through the day. I found myself feeling depressed, and then I would feel guilty for having those feelings about my baby. But I eventually came to realize that facing an unexpected diagnosis is going to bring up some not-so-pleasant emotions, and that doesn’t mean I love my son any less than if he’d been born with full hearing. It just means I’m human, that I’m learning to accept the hand we’ve been dealt, and determining what the next steps are.
Even now, months later, I still have those random days where I feel angry and upset all over again. Now I know I just have to sit with those emotions and that doesn’t make me any less of a good mom. As a parent of a child with hearing loss, any emotions you feel are completely valid.
“As a parent of a child with hearing loss, any emotions you feel are completely valid.”
After Cooper’s diagnosis, if you’d have told me I’d eventually find some positives in it, I’d have stared you down in disbelief. But it’s true. Through this journey, we’ve found numerous silver linings. We’ve connected with other parents going through similar journeys, incredible people we never would have known existed without this diagnosis. We’ve been able to spend more time with my family since they live near the hospital we use.
We have come to realize that we’ll get to experience moments that most parents won’t or don’t necessarily pay attention to. We even find the humor in it sometimes, like when Cooper is dead asleep and the dogs freak out, and he just continues to sleep peacefully. There are so many slivers of light in what at first feels like total darkness. You just have to be willing to look for them.
“There are so many slivers of light in what at first feels like total darkness. You just have to be willing to look for them.”
I seriously cannot imagine facing a scary diagnosis in a time before the internet. Sure, there are times when there is almost too much information out there, and there’s always the risk of it not being accurate. But more often than not, a quick Google search can answer so many of the questions around hearing loss I’ve found myself facing In fact, searching the internet was actually how I came across Waardenburg Syndrome, which is the cause of my son’s hearing loss. I truly believe the internet does more good than harm when it comes to being able to educate yourself as a part of a special needs child.
Every single person on our medical and early intervention teams have been a godsend. We’ve been lucky in that we’ve been comfortable with everyone from the beginning. I’ve never once felt like Cooper was just another patient. Our ENT and audiologist have both put our minds at ease numerous times and have proven time and time again that they truly care about Cooper and his future. They are willing to do whatever it takes to make that as successful as it can be.
The same can be said for the individuals on our early intervention team. Though Cooper is only five months old, they have been out to our house numerous times and already have a plan in place for his therapies and education. If you don’t feel comfortable with someone on your team, I strongly urge you to move past that person and find someone you are comfortable with. It makes a world of difference.
It’s easy to feel alone after a hearing loss diagnosis like no one else can quite grasp what you are going through as a parent. But that’s not true. There are so many others out there who are facing the same or a similar diagnosis. If we’re willing to be open and vulnerable, social media has the ability to connect us with people going through the same things we are. It also allows us to form a support system. There are some other mamas I’ve met through this journey that I feel I’ve known for ages because of the bond we’ve established over our kiddos and their hearing loss.
Read more: Tips for parents new to hearing loss
As we’ve navigated this journey of what it’s like having a deaf baby, there have been so many people who have stepped forward to offer help, whether through connections, meals, or financial assistance. I’ve been moved to tears time and time again by the kindness of people I barely know. It’s sometimes easy to get caught up in the negative events going on in the world and overlook the acts of kindness. But this experience has truly shown me that even in the midst of the negative, there are always good, kind people.