A dad’s perspective…

Up until now, I’ve shared much from my experience and perspective as a mother of children who have hearing loss. Most of the articles, testimonies and stories that I have read from other parents on similar journeys to mine, have been very encouraging and almost always shared from the mother’s point of view. Over the past few months, I have connected with a few families grappling with the diagnosis and initial decisions regarding their deaf children and have seen how very real, yet often understated, the father’s grief so often is…a different perspective, a different lens through which the same situation is viewed. So, I asked my husband, Graeme, if he would mind sharing a little of his experience, and this is what he gave me to post on this blog…

[Since we are a family, and yet all experience this walk slightly differently, as the father of the three daughters you have read about, I thought it appropriate to share some of my experience of the journey we have been on. The shock of the diagnosis was tremendous and literally left me speechless. I remember clearly being semi prepared for Tahlita to have hearing loss but in all honesty was not expecting the same diagnosis for Hadassah. To find out that Tahlita’s hearing loss was as significant as it is, and then to be told that Hadassah’s was much the same, was like a bomb had just destroyed everything that I had planned for our family and future.

It was difficult trying to deal with my own emotions and at the same time being the supportive father and husband to a now emotionally broken family. In an instant life looked completely different. I had spent about 10 years planning the financial future of my family (yes, this had started even prior to meeting Bianca) and now all those plans seemed meaningless. Every plan and dream that had filled my thoughts and heart, all in one moment, suddenly seemed shattered. This experience was, at times, very surreal and often left me feeling very numbed.

I can remember very clearly after the twin’s results, just needing to speak to someone who was not immediately involved. I went upstairs, closed the bathroom door and called my father. He answer and I was unable to speak…the only sound I could produce was muffled sniffs as I attempted, very unsuccessfully, to hide the fact that tears were pouring down my cheeks. All I could think about were my two beautiful, intelligent little princesses that could not hear the world around them.
I guess a big question for me was also, “How was I supposed to be the husband in all of this?” After all wasn’t I supposed to be the strong one that could be there for my wife that was going through the greatest crisis in her life? I ended up realizing that we had started this journey together, we had received the diagnosis together, we were going to end this journey together and since we were busy losing our dreams and all ideas of normalcy together, it would be ok if we cried together too. And so started our new idea of life and engaging in a world we knew nothing about and certainly were not prepared for.

Being at work full time (and sometimes more than that) left me in a position that I was unable to participate in most of the initial visits to schools, therapy sessions etc. This, I guess, is fairly normal in most families that require one parent to scale down on work and focus more on the children. I would come home from work and get the full story about all the potential options for hearing aids, schooling etc. Although I was unable to physically be at all the places, Bianca certainly included me in all the decisions and this really helped me be part of the journey. It wasn’t easy getting going and understanding our new world but things certainly do settle down over time and what initially seemed foreign and terrifying eventually becomes more comfortable as time goes on.

Eden’s diagnosis was the next cycle of the washing machine which I felt was certainly our lowest moment. Trying to make sense of all your daughters being deaf was no easy exercise. I remember when she went for her screening test. She had fallen asleep whilst in the car with me, and so I rushed her off to the audiologist’s rooms to attempt her screening test again. Initially we attempted to test her while she was sleeping in her car chair with the doors open as it was a very hot day. We were struggling to get responses and reasoning everything possible in the hope of excusing our fears. The test was repeated again and again in the car. I was standing outside watching our hope of a normal screening test crumble. She was eventually taken out of the car and I carried her, still asleep, into the therapist’s rooms. Now with all doors closed, the tests were repeated again and again and with growing concern on the therapists face. What news awaited was obvious. Eden woke up, I held her close, again with tears rolling down my cheeks my thoughts were, “my baby, so beautiful and full of life but just can’t hear”. Bianca was waiting for the news. We had been much longer than expected, I had no doubt she knew there was a problem. None-the-less how was I going to tell her that her 3rd baby couldn’t hear?

As time has passed and we’ve become better at communicating as a family, I have really been able to embrace the role of “Daddy” more than ever. One of my favourite moments of the day is what happens during bed time routine. Little Eden is quite a character, and when I kiss her good night, her sweet little face lights up as she utters “Iluboo” and then presents her little hand to me which is usually signing the letter “F” to have me fold her fingers into the shape of the “I love you” hand sign. This is followed by much giggling from this blue-eyed princess. It really has been amazing to see my daughters move from a place of stagnation to a place where they are growing, speaking and signing and are more confident in who they are. Recently, Tahlita, was able to communicate very clearly to me that she not only wanted cornflakes, but also wanted the muesli in the ‘black box’, for breakfast. I left for work that day very grateful that my daughters were indeed starting to communicate effectively with me. The frustration of not understanding each other, and the ensuing tantrums, were being traded for understanding and communication.

They are my princesses and, as any father, I would give the world for them and the decisions we make for them have never been with a shortage of consultation, consideration and prayer. One thing that I realized is that we will only make it through this as a family, together. Therefore we cannot separate our decisions about any individual child from the impact it will make on our family as a whole. The biggest factor that has equipped and empowered us to move forward from the day of diagnosis, embrace our reality of being a family with deaf children, and actually now be at a place of renewed joy and hope, has been LOVE. We trust that a Love much bigger than our own, has exciting and wonderful plans for our family.

We have also been very blessed to have the love and support of wonderful family and friends who have also had to go through their own unique journeys of grief about our girls’ deafness. As Bianca has mentioned before, we are also extremely grateful for the support, love and guidance that HI HOPES early intervention programme has shown to us. Soon, Bianca will inform you of my intent of helping to do my part to fundraise for this organization, to ensure that families like ours aren’t left in the dark during a potentially, and at least initially, very difficult time of their lives.]

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I have opened the can of worms.

I have attempted to write this blog several times already. Each time, I seem to reach a dead end for some reason. It is a subject that is sure to ruffle the feathers of many people in the deaf world, and so, trying to explain my experience whilst not wanting to offend anyone, seems like an impossible task. Processing this option out loud, is also something that I find quite exhausting, and so often, a few thousand words into my thoughts and feelings about possibly the most controversial topic in the world of hearing loss, I’ve just given up. It is however, a topic that is eventually addressed by many families with deaf children, and so I really do want to share our experience of investigating this possibility. If you haven’t guessed it by now, I’m referring to cochlear implants. I considered only addressing this issue on the blog sometime in the future once our decisions have been made, as a retrospective account of our experience. The questions, doubts, fears and opinions that one encounters in the middle of such a decision making process, makes this tug-of-war experience worth sharing whilst my thoughts are not neatly ordered and at times even seem contradictory. This is the reality of being a parent with the question of CI set before them.

Medicine is a profession filled with topics of controversy. Whether they be ethical or treatment based, most specialty fields will eventually expose areas where there is no black or white. In all my exposure to a range of “hot topics”, I have never encountered the extent of controversy that the cochlear implant creates. On one side of the spectrum, ENT specialists may make a parent feel like their only hope for their child’s future is a successful CI…that this is the miracle “fix” of deafness and consequently a sense of urgency results. On the other side of the spectrum, are the extremists who see CI’s as dangerous procedures that could only harm one’s child, rendering them with chronic pain, and horrendous complications. On Facebook a few days ago, within 24hours, I viewed a post revealing a miraculous “switch-on” moment when a child responded to sound the first time when his cochlear implants were activated, as well as an article of how a child died because of their cochlear implant. The opinions out there are extreme, and really can get quite ugly. For a parent who wants what is best for their child, this makes the decision very difficult, and for a parent of three deaf children whose needs may be different, this decision almost seems impossible at times.

Everywhere I go, someone is eagerly sharing their opinions about whether or not we should have our girls implanted. Once I was paying for some pies at the bakery. The teller took one look at the girls’ hearing aids and confidently suggested that I take them for cochlear implants. She had read about a success story in a magazine, and thought it was quite obviously the right option if I wanted to “cure” my daughters’ deafness. We had never met before, she didn’t know my name or anything else about us. Well, she knew what we were having for lunch, but that was about it. The most painful arena where this surgical option is often enthusiastically suggested, is at social gatherings like children’s parties where we find ourselves at. Being doctors, a large part of our social circle are medical people. At one such party, a doctor, who has no experience with deafness, who has never even met us before, had been staring in our direction for quite some time. Eventually, he came over and his opening line of introduction was, “have you considered cochlear implants?” I just smiled, and said that I was investigating the option and hoping that hearing aids would provide adequate amplification. “You should really consider implants!” was his response. I made a 2 second weigh up of my possible responses. Eventually, opted for a conversation killer, “Yes, thanks, we’ll look into it,” and off I went to sooth my frustration and fear with a purple cupcake. The truth is that my response in my head was, “Hi, my name is, Bianca, by the way. You’ve probably noticed their hearing aids, or possibly been part of a group discussion about our three girls. Do you actually know what CI’s entail? Have you ever seen the surgery, know the success rates, know what the possible complications are? Are you interested in finding out how their hearing aids are working? Have you any idea of how much the whole process would cost or what the rehabilitation thereafter entails?

To shed a little light on a mammoth topic, and address some of the questions that I wished I had had the energy to pose to this enquiring colleague, let me start by briefing you quickly on what a cochlear implant actually is. Let’s start with the basics (and this really will be a crude description as the cochlear is an extremely detailed and incredible structure)…the cochlear is a small snail shaped structure in the inner ear. A part of this structure is called, the Organ of Corti which contains thousands of tiny hair cells that are stimulated by vibrations produced by sound waves that enter your ear, and then convert the sound waves into signals that go to the brainstem, via the auditory nerve, for further processing which in turn makes us “hear” the sound. The cochlear is a remarkable little organ that has been carefully crafted to allow us to perceive sounds of much complexity and a wide range of frequencies. It’s complicated and incredible! In the case of sensorineural deafness, problems with little hair cells are often the cause, which is where the cochlear implant becomes an option. A cochlear implant, basically involves an electrical wire being threaded through the coils of this organ. It has electrodes that receive the sound signals, instead of the hair cells, and then send electrical signals to the auditory nerve. The sound perceived by the brain is robotic, and those sounds then need to be recognized or learned in relation to previous sounds that may have been heard. For example, imagine hearing the sound of the word “water”, now imagine a very robotic voice saying “water”. If you did not know that this is what was being said, it would take a while to recognize that the distorted sound that was being made, was actually the word for water. So basically, you’re in square one when it comes to learning to listen. With new technology, I’ve been told that there is much improvement with the quality of sound and preservation of normal acoustic sounds, but let’s face it, 30 odd electrodes hardly seem impressive when compared to several thousand God-given hair cells. In saying that, though, if your cochlear is not working as it should, then you don’t have much to lose and having access to any sound, in my opinion, would be fantastic. The surgical procedure can cause damage to some of the hair cells that may have already been working, rendering an ear that did have some residual hearing, completely deaf. Although, not very common, the possible risks of the procedure include things like meningitis and other infections as well as the common anesthetic risks that are related to any procedure. The rehab thereafter, is definitely the most daunting part for me, involving years of intensive therapy to get the child to learn to listen again and learn to translate their new sounds into language. Most CI teams (surgeons and therapists) will enthusiastically encourage a signing family to remove all forms of visual communication from their child’s environment in order to encourage more opportunities to practice listening and engage with the new sounds that they are now able to hear. That may mean communication frustrations all over again, relationship strains and a change of schools.

I have met and witnessed children who are now teenagers who were implanted early, and one would never know that they were deaf. They speak beautifully, are coping well in mainstream schools and as a whole, appear to be the “poster children” of a deaf “success story”. Then I know several children who still don’t speak a word, in spite of being implanted. They do not always work, but when they do, it’s evident that they can work well. Really well. And then there are loads and loads of deaf people who may have been candidates for CI (not everyone qualifies to have a CI, but I won’t go into this now), weren’t implanted and have lived extremely successful lives in spite of not being able to speak. These all lead me to the question of what the desired outcome is? What am I viewing as success? Again, Am I using what’s ordinary to define “normal”? These questions have different answers for different parents, which I believe is absolutely fine and reasonable. If success equates to speech, then possibly, CI’s are worth a try. If success equates to communication and fluent language, knowing you’re loved and having equal opportunities to reach your full potential and live your life to the full, then are the risks, stress and cost involved, worth it? Will my girls resent attempts at “fixing” them or will they be disappointed at not being given possibly better access to sound than what their hearing aids may be providing? I am not sure.

Currently, we are trying to ascertain the full benefit from their hearing aids before actually making our decision, but my gut feeling is that they would be candidates for implantation on their profoundly deaf ears. For interest sake, a CI costs in range of R300 000 per ear. The most comprehensive medical aids only pay a portion. I have 3 deaf daughters, you do the math.

My intention of this post was to expose the extreme bias that exists around this topic and highlight the difficulty that a parent consequently has in making this decision. This is a decision that needs to involve the family and not be made on their behalf by a professional. There is no black or white, no right or wrong, in my opinion, but rather a weigh up of very individual and unique pros and cons for a particular family and a particular child. In my case there are three, which complicates things somewhat. My definition of “success” does not equate to speech alone, and I appreciate the other less measurable variables such as the emotional impact etc. I have viewed hundreds of successful, “switch on” videos on YouTube and read and felt quite ill over the horror stories and tragedies related to this procedure that have been posted on many platforms. I am well informed and supported, and although appreciate that most people mean well, I’m not looking for further opinions.

I am so grateful to be communicating with my precious three, and that is definitely my focus for now, I’m not sure of what our decision will ultimately be, and should we opt out, we may decide to opt in at a later stage. Again, I just don’t know. What I do know, is that the lives of my daughters and my family are in very capable hands. The hands that designed the complicated snail shaped structure that men have failed to perfectly replicate. Irrespective of our decision, in the end, everything is going turn out okay.

Being Named…

In the deaf world, to avoid the tedious task of having to finger spell out a person’s name every time you refer to them, a “sign name” is assigned to the individual, which usually depicts a prominent physical characteristic which is often on the person’s face. I mean, with long names, like Hadassah, I certainly would get finger-tangled if I had to finger spell her name ever time that I wanted to mention her.

The girls were assigned names which point out prominent freckles on their faces, followed by the alphabetical letters that their names start with. It took no time before they recognized their new names, and Hadassah does the “2 dot – H” signing with such confidence and really flicks out the “H”. If you have a physical feature that is prominent, whether it be a mole, a big nose, acne scars or a double chin, be sure that your sign name will probably highlight that. For a hearing person, this is incredibly intimidating, as for example, if you have ears that stick out, no one ever mentions it, as most of us feel self-conscious about those features that make us most different from one another. We like to blend in with everyone else and tick all the boxes of what society deems attractive, so to be called “scar on my forehead – G” for example, is not something that a hearing person would feel comfortable with.

I’d been around the school for the deaf for a while, and was always just referred to as “mother 2 dot-H” or “mother 1 dot- T”. I was comfortable with that, besides, their little freckles are too sweet! I knew the time would come, however, for me to be “named”. I was dreading it! I was invited to join a sign language class at the school, which I eagerly accepted, but knew that this was probably going to mean receiving a sign name. I stared into the mirror for a good few minutes that morning…freckles? Skew nose? Chubby red cheeks? PLEASE, No!

My first sign language lesson started with everyone in the class having to introduce themselves to me using their sign names – gulp! And then I was asked whether I had a sign name. After admitting that in fact I did not, I had to endure at least 6 pairs of eyes staring holes into me as they scouted my face over and over for the right feature. This. Was. PAINFUL! Eventually our teacher decided that she’d give it some thought. I managed to escape the physical feature and received a name that highlighted the fact that I am a mother and a doctor and that my name starts with a “B”. So it kind of looks like the sign for mother (or doctor) with the hand shape of the alphabetical letter “B”. What a relief!

What I have to admit, is that I really admire and appreciate this aspect of deaf culture. We’re different and that’s what makes us identifiable and beautifully unique, get over the awkwardness of having the feature that everyone sees everyday anyway, pointed out, and enjoy being embraced “warts and all”. Isn’t this expression of beauty, lovely? “There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection.” If I want my girls to embrace their “perfect imperfections”, I guess that I’m going to have to lead by example.