The memory of my son’s diagnosis is crystal clear. Sitting on the stool in the ENT’s office, my son on my lap, my husband in the chair across the room. Trying to keep my emotions together as the doctor proceeded to tell us that the reason our son was speech delayed was because he had moderate to severe sensorineural hearing loss and would need to wear hearing aids for the rest of his life.
Nobody tells you what you are supposed to really do after this moment.
Of course, there are the clinical procedures you need to go through – such as a referral to an audiologist who fits your child with hearing aids, or to a surgeon where you discuss the possibility of a cochlear implant. But in so many cases that’s it. You are sent on your way, with no instruction manual. The roller coaster of emotions throwing you all over the place.
As a parent we think we are the ones that are supposed to have all the answers. We need to be strong for our children, we need to be in control. But, the moment your child is diagnosed with hearing loss you instantly move down to the bottom of the list and become helpless as to what answers you are able to provide.
I know that I have never been more vulnerable sitting there in the ENT office. I wasn’t the same confident parent that had walked into the office. I realized I had no idea what I needed to do to help my son.
Vulnerability, along with shame, are two of the biggest emotions you might feel at this time. And, those are two things that are so difficult to talk about. But, not talking about and acknowledging these feelings can lead into us not quite accepting our child’s diagnosis.
WHAT IS SHAME?
Shame arises because we believe there is no one else who is dealing with the same issues. That we can’t reach out and talk to people because they wouldn’t understand and that they would judge us.
Brene Brown, in her book I Thought It Was Just Me (But It Isn’t), defines shame as “the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.” And this is a really easy place to get trapped in as a parent. Your child is most likely the first person you have ever met with hearing loss. This sense of isolation is one reason shame is so powerful because it we are alone.
I experienced some of this when my son was first diagnosed. He had just turned three and was enrolled in a neighborhood preschool. There was only a couple of weeks left in the school year when he started to wear his hearing aids to school. I remember the end of year picnic where we sat and only one other family came over and sat next to us, even though I had known those families for almost an entire year.
I just kept a smile on and pretended that nothing was wrong. But, now that I think back on it I think they were also experiencing their own shame, about not knowing how to act around a family who has just received a diagnosis, what questions should they ask, what questions should they avoid. All of that stuff that everyone had to deal with. One minute our kids were all the same and then all of a sudden they weren’t.
ALLOWING OURSELVES TO BE VULNERABLE
Vulnerability is not a sign of weakness. Instead, vulnerability is about accepting ourselves where we are, and not putting pressure on ourselves or our children for anything more than we can handle. It’s about letting go of perfection, because when we do this then we can truly open ourselves to others.
“Vulnerability and resilience do help people take risks and live courageously,” says Dr. Laura Harbart, a clinical psychologist in Pacific Grove, California.
“Acknowledging vulnerability is possible only if we feel we can reach out for support. To do so, we must feel some competence in our relationships.” The likelihood of our finding the insight and courage to acknowledge our personal vulnerabilities is dependent on our ability to share and talk about those vulnerabilities with someone we trust and with whom we feel safe (Brown, 2007).
Opening ourselves up to experiences and connections means we need to be vulnerable. If we remain closed off, hidden behind a wall then we can’t find the connections we need.
So here is to fully embracing vulnerability – because vulnerability not only means that we might open ourselves up to hurt – but it’s also the birthplace of joy, creativity, belonging, and love.
Full disclosure: I agonized months over writing this post. Shame and vulnerability are two things that nobody really wants to talk about. And I wanted it to read perfectly. Then of course as I was writing I realized that there is no such thing as perfect and instead I needed to allow myself to be vulnerable and just get this post out there so that I could connect with others who had similar experience and then I could move on.
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