I have been holding my breath since January and finally, I can let it out.
If I’m being really honest, I’ve been holding my breath since we learned of Cooper’s hearing loss, carrying a weight that has just become part of me. The anxiety that something more is wrong, that your child’s condition may worsen, that it could be your “fault,” it takes a toll. And the thing is that when something seeps that deeply into your bones, you don’t even realize the magnitude of it until it’s been lifted.
A few days ago, after 20 months and two rounds of genetic testing, Cooper’s test results came back. Like the first time, this second round gave us no conclusive answers whatsoever, something I’d been prepared to hear. As I chatted with the genetic counselor, she asked how I was feeling after hearing the results (or lack thereof).
I paused, thought about it, and said, “Oddly enough, I feel at peace with not knowing. And I’m okay with the likelihood of having another child with hearing loss and Waardenburg Syndrome.”
She replied, “I don’t think that’s odd at all. You’re an amazing advocate and the universe would know what it’s doing giving you another child like Cooper.”
At that point, all the emotions I’d been holding close eased to the surface. A year and a half ago, my world shattered as I heard Cooper’s diagnosis for the first time. I didn’t think I, a hearing parent, was equipped to handle one deaf child, let alone multiple. And now here I was, talking about that possibility — and more than that, hoping for it.
The thing is, I’ve always feared the unknown. But if raising Cooper has taught me anything, it is that there is beauty in it. There is a deep learning experience in truly examining the hand you are dealt, in grieving it, accepting it, embracing it. There is humbling in learning to let go of control. And most of all, there is peace in knowing you are doing all you can do.
Do I still struggle with not knowing how certain things will play out? Of course. It’s how I am wired. But I realize now that I am more capable of rolling with the punches than I previously thought myself to be.
I’ve accepted that we likely will never know exactly what it is about myself and Brandon coming together that has caused Cooper’s hearing loss. And I can truly, wholeheartedly say that I am okay with the not knowing.
I am okay with it because today, right now, this very moment, I have a healthy, happy, perfect little boy who knows love and acceptance and fierce loyalty. And that…that is enough.
Background on Genetic testing
I figured this section may be helpful as some of you are probably wondering how Cooper has a Waardenburg diagnosis, yet it hasn’t been confirmed via testing. I’ll try to make this easily digestable.
In short, there are four types of Waardenburg Syndrome and six genes associated with those types. The first time we did genetic testing, at the end of 2019, our medical team suggested only submitted those associated genes (EDN3, EDNRB, MITF, PAX3, SNAI2, and SOX10) rather than doing a full hearing loss panel as they typically would. This was because Cooper had such classic Waardenburg traits — his white forelock, bright blue eyes, widely spaced eyes, and his hearing loss. When those results came back in June 2020, they were inconclusive.
At that point, our genetic counselor told us that this happens in about 10% of Waardenburg cases and it’s likely that there is a gene associated that they have not figured out how to test for. We were told that because Cooper met the major and minor criteria for Waardenburg, to keep operating under that diagnosis.
In January 2021, we chose to undergo a second round of testing due to two things: Cooper’s larger head size and gluteal cleft. While neither had lead to reason for concern, our medical team wanted to rule out any cross-syndromes that could explain those two traits. During this second round of testing, they screened for a much wider range of conditions. As we now know, nothing abnormal came to light this time either.
It’s possible that in the future, there may be more advanced testing available for Waardenburg Syndrome, something that could confirm it 100%. Whether or not we or Cooper choose to undergo that will have to be determined then.