Fathers and grief: a conversation on raising a child with hearing loss

This is a re-post of an interview that Krystyann Krywko published on her blog www.kidswithhearingloss.org in late summer.

I re-post it to give to Krystyann more visibility as possible.

I deeply suggest to visit her blog and inscribe to her newsletter, full of amazing interesting materials and reflections on what means the experience of parenting a child with hearing loss.

Following here, it is the interview:

Things have been quiet around Kids with Hearing Loss these past few weeks, mainly because of summer traveling that interfered with my work plans. But, we are back from our trips to Chicago, Canada, and Lake Placid, and have now settled into some sort of a daily summer rhythm.

Even though we have switched into July, I want to continue with the Focus on Fathers series that I started way back in June.

The next in the series is an article on how fathers deal with their grief when they first find out their child has hearing loss. It was difficult to find the research that I wanted. Not only are there very few studies that focus on grief and hearing loss, the few I did find were focused on the reactions of mothers.

So, in order to help me fill this knowledge gap I turned to friend and colleague Paolo Brusa, who lives in Italy. Paolo is married with two children, Alice (age 9) and Lorenzo (age 7). Lorenzo was diagnosed with hearing loss around the age of 2. Despite the miles across the ocean Paolo’s story is very similar to mine and so many others who had children who were late diagnosed.

Paolo is a psychologist, and his wife is a Jungian psychotherapist, and what makes their story so interesting is that they are in the position to analyze what they are going through at the same time as they are living it.

Paolo, thank you for taking the time to speak with me about your son. It can be difficult to put into words the mix of emotions that are first felt after your child is diagnosed with hearing loss. Emotions at this time are often contradictory and come flooding in at strange moments. How did you respond when you first found out about your child’s hearing loss?

Agreed. I experienced all kinds of emotions during this time. My reaction was very mixed, which is common. Over the course of a few days I experienced:

• SADNESS: It was a grief for the deep awareness of how things would be difficult from this very moment onward. This grief was mainly for my son, but also for my daughter, my wife, and myself. There was an intense melancholy for all the possibilities that were radically shut down and disappeared in that very moment.
• CLARITY: The diagnosis also provided clarity on what the problem was, and this was reassuring in a way. That moment of diagnosis gave birth to thousands of new questions. Will he be able to learn? To talk? What will the future hold? We had these questions because like so many parents we had no idea what having a child who couldn’t hear would be like. We really were starting from ground zero at the very beginning.
• RESPONSIBILITY: A deep sense of responsibility to my son, in order to be supportive and nurturing and trying to avoid the trap of becoming heavy and stuck. Also, a deep sense of responsibility to my wife, whose grief as a mother was profound. And, also to my daughter, because she needed all the love and attention and care as well, without any distractions.
• ANGER: There was also anger and rage and hate too. For all the time which was lost because doctors were unable to see what was happening to my son.
• AWARENESS: There was also a weird feeling of awareness, a sort of mix between deep inner peace, knowledge, and realization. I knew deeply that it would be hard, that some possibilities were gone forever. My son’s childhood would be different, and complex, and hard in some ways. There was nothing I could do about that. But at the same time I also deeply knew that the most important things in life are bound to the quality of the life we live. You are not what you are missing, or lacking; you are what you are.

Those are a lot of emotions to work through, but I remember myself going through similar reactions. Do you feel your experiences as a psychologist helped you at this point in the process?

Well, there was another thing that I knew. A couple of years ago I was working as a psychologist in charge of two projects funded by the European Union commission. During those years I worked with families of people who had severe disabilities.

During a meeting in Gijon, some parents reminded me a basic fact: “este istante es tu momento (this very moment is your very moment)”. They also told one truth-full joke: when you know the diagnosis, you have just one word to say: “PuMaS”. One side, it evokes the power & the strength of the wilderness, together with the significations & attribution of the totemic animal: power, strength, courage, together with being intuitive, protective, fierce, vigorous & caring. On the other side, PuMaS is the acronym for “Puta Mala Suerte”. Which is to say that things just happen, & one can spend an entire life going against or trying to fix them, or one can just learn to accept them & move on. Open to what'll come next. (note: This paragraph has been added to me in this post, & where not present in the original, I apologise with Krystyann, hoping she don't mind this little “contamination”)

It became clear to me that an individual’s destiny is something totally distinct from an individual’s problem. So, I think this knowledge did help me adjust to what the future might bring.

So, based on your experiences as a psychologist, how do you think men process grief differently?

Once men let themselves process grief I don’t think there are that many differences. Really the differences have to do more with a cultural stereotype meeting gender-related issues, and how men do or don’t acknowledge their grief.

This idea that men are so tough and strong and that they can’t allow themselves to show things. It’s important for men to learn to be a bit more sensible with their emotions. To educate themselves to look deep into themselves, not to fear emotions but to enjoy them, whatever they are, free of any judgements. And to really let their partners see and understand what they might be going through.

How can fathers begin to accept and work with the emotions they are feeling?

Generally speaking, by simply telling the truth: to themselves; to their wives and partners; to their children. In my work I always remind people that emotions are just emotions, and that instead of trying to work against them, we can learn how to cope with them.

Plus, I believe that as you work with your emotions this allows for the opening of new paths of acceptance and possibilities for everyone in the family. But, there has to space for these new possibilities to arise, and if you are stuck in your emotions that space won’t be there.

That leads right into my next question. How can fathers become “unstuck” from the grief they are feeling?

Whenever a person is experiencing a situation of great difficulty, it is normal to want to retreat and to stay stuck in a place where you would feel more secure and confident. This of course implies a certain degree of other defences, such as the denial of the situation.

Of course some of the most common questions parents of a child with hearing loss have concern the possibility for the child to hear and communicate. In many cases the child is at an age when they simply cannot “properly” communicate to reassure their parents.

I suggest men focus on their body and finds ways to use it to establish the first direct contact with their child who is deaf. One very easy example is when the father reads a fairy-tale or sings a lullaby, they can lie their child on their chest. They can then start to gently tell a story, or a sing the lullaby. Their child will naturally establish the contact, feel the vibrations from their father and get cuddled by these warming vibrations.

This happen to be the basic of any communication: passing something in one way or another from one to another. When men experience this way of communicating with their child they tend to discover how emotions are precious, together with their acceptance and enjoyment. They find themselves “unstuck”, and can embrace their child, their wife, and themselves too.

That’s great. It’s so important to establish that connection in any way you can. Do you have anything else you would like to share?

When the grief starts to storm out our perspectives, someone has to hold to the roots, to ingrain the tempest into a sense of possibility which need to be settle down, so that adults can become effective parents.

This can be quite a challenge to accept that things happen, and that even in difficult situations, individuals can always work to transform their pain into grief, and onward into something that can be positive. Since, my wife and I found out our son was deaf our lives changed, and we were somehow forced to re-direct it, and re-define it.

We rediscovered what is really important, what and where the real meaning of life stands, and how this has nothing to do with an ability or a disability, but with the openness one has in accepting his/her own life, and fully live all the arising emotions.

We re-designed our priorities, focusing on what it is important to be, more than on what it is important to have. To life a full life is the right of each human. This is valuable for me as a father, as a husband, as a psychologist. It valuable for my wife, for my family. It is valuable for my daughter and for my son.

Accept the truth, and tell the truth, is quite an honest way to be. The acceptance of the wholeness of what life offers me is the best way I found to open to my children the possibility to life their life fully.

Paolo, your words are just beautiful and so inspiring! I want to thank you for sharing your experiences and bringing such a different perspective to raising a child with hearing loss.

If you enjoyed reading this post and haven’t yet subscribed to Krystyann Krywko blog, please take a minute to do so: connect to www.kidswithhearingloss.org and follow the indications in the sidebar.

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Photo credit: Scott Akerman