I sit, slouched on a wrinkled leather chair, seizing this moment to share a new turn in our ever adventurous journey. The chatter of the nurses, and intermittent beep of monitors intrude my thoughts as my mind is on my three precious ones. The friendly tractor print curtains frame a beautiful view of oak trees which set the scene for reflection of both the now and then.
At this very moment, my littlest is probably sitting in her morning ring at school, she probably still has peanut butter smudges across her peachy cheeks from finishing her breakfast en route. One of my twins will likely be very mindful of her sister, whose little empty chair and open desk space tells of yet another adventure.
Upstairs, my eldest daughter (although only by a minute, this is a fact that she’s proud of) is undergoing a cochlear implant. As a well informed mother and medical person myself, I have a fair idea of what is happening in that cold and sterile cubicle. Sometimes, too much information is not comforting, but knowing that she is in good hands and surrounded by love, quietens the list of anesthetic and medical complications that flash through my mind.
Up until recently, although cochlear implantation (CI) had been something that we initially considered and informed ourselves about, we had opted not to pursue this option for a variety of reasons, the primary reason being the cost. A CI is extraordinarily expensive. The initial process for 6 ears would cost in the region of two million rand. Much of this would be covered by a medical aid, but the shortfalls are still massive. There are also significant on going expenses. In saying that, we have also been using hearing aids, which have given some access to sound for all of my girls, and with a recent new trial of aids, significant access has been achieved with my other two.
Traditionally for children, cochlear implants are used to give young children access to sound to enable them to develop speech. The spectrum of outcomes is wide, depending on a number of factors, such as the age of implantation. The current recommendation, says that the earlier the implant, the better the outcome. I’ve met children with very varied outcomes, from children who haven’t developed a single spoken word, to children whose speech sounds exactly like that of a hearing person. The sound that they access is very artificial, which requires significant auditory and speech therapies to maximize benefit. For most deaf children, continued support in school, whether it be through FM systems, smaller classes and an accommodating teacher, is needed, as hearing in a noisy environment is often challenging.
Our family has viewed access to sound as a piece of a larger pie. We view an amplification device, simply as a tool to do this, and up until now have opted for hearing aids. Another piece of the pie is language and communication. This has been something that we have prioritized as this is directly related to brain development, and I’m so grateful that early language intervention has allowed us to catch up and then optimize this. Through both spoken English and South African Sign Language (SASL), our family communicates about anything we like. A blessing that I appreciate more than words could possibly express. Other pieces of our holistic pie include, education (both formally and informally), family relationships, self esteem and emotional well being etc. With understanding, that whilst these can interplay with another, there are different ways of approaching every area, to see each and every one of my girls reach their full potential. I am in full appreciation that no access to sound need not hinder this at all. However, if they are able to, I am willing to assist that process. Because I have been able to separate our amplification choices and communication choices, embarking on this adventure has been far less stressful than what I have witnessed in the lives of fellow parents. If my daughter speaks beautifully, all well and good, if she doesn’t I will not be disappointed. Her ability to access sound, makes her no less whole, in my view.
So why is my baby under several layers of sterile draping as I type this?
She is an exceptionally sporty child, and as parents who have opted to achieve access to sound within our financial means, there have been a few times whilst she’s been out on her bike, where I’ve thought, “Mmmm, some sound access would make me feel a little more comfortable about her safety. If we could find hearing aids that could achieve this, we’d certainly invest in them.” This has been mulling around my thoughts for about 6 months now.
As last year progressed, it became evident that my other two daughters were accessing more and more sound (I put it down to language stimulation facilitating brain development). During the recent school holidays, I heard a cow bellowing in a nearby field. I drew the girls’ attention to it whilst I cued, “Moo!” After poising to listen, Tahlita and Eden said that they could hear the cow, and took great enjoyment in trying to be the first to scream out “Moo!” as soon as they heard the cow mooing. This is a difficult balance as a mom with three deaf girls, as whilst I try to improve their listening skills where they can access sound, I never want them to think that it is a bad thing if they can’t hear. Hadassah listened and listened and admitted that she couldn’t hear the cow, so we all cued ‘Moooooooo’ over and over so that she could ‘see’ the sound. My girls have friends who use CIs, and have often asked me why some of them have CIs and others have hearing aids. I’ve usually explained to them that CIs are like strong hearing aids that need an operation. With this in mind, whilst strolling along a mountain path during the holidays, she stopped me and explained in SASL, “Mama, I think I want to have a cochlear implant. My hearing aids don’t work.” Not expecting this at all, I stood looking at my gorgeous, intelligent and mature 5 year old, beyond grateful for our ability to discuss this without limitations in communication, and thought, phew, this parenting journey has many unexpected turns.
Over ice-cream later that day, I asked Hadassah to share her request with Dad and her sisters. She did so, as they all sat quite surprised. My littlest shuddered in disapproval of the idea of having a “cut” in her head, whilst her twin sister nodded at Hadassah’s desire, she was sure to express that she didn’t want to have a CI (but did want us to change her hearing aid casing to her new favourite colour, gold). We left it at that, whilst I realized that this was a leg of our journey which we were soon to embark on.
One thing that these past few weeks has allowed me to appreciate more, is just how tough decisions can be for parents. Everywhere you turn, you feel like you need to defend a choice that you’ve made. Whether it be about defending SASL to people who still see it as an inferior mode of communication, and in innocence and out of ignorance, ask things like, “So does this mean you won’t have to sign anymore?” From my side, it’s almost an instant reply of, “We WANT to sign too, we are a bilingual family, just like Afrikaans and English families don’t need to make an either or choice, and honestly, I’m letting my kids lead me as to what works for them…” And then there is the strong disapproval about the CI from others. Some people view this as excessive intervention and even equate it to child abuse. I do feel this a strange concept, considering their acceptance to the use of hearing aids; she’s still profoundly deaf when amplification is off. Strong opinions on either side, the parent caught in the middle with the simple intention of wanting to make the best choices for their child. Another day in the life of a parent whose child is deaf. Live and let live, let’s stop being so quick to judge, whether about communication mode or amplification device!
I must admit, that I did not expect that my girls’ active involvement in the choices for their lives would start this young. It has been wonderful to talk her through each and every step, and have her express both her excitement and anxiety.
I have had many questions being asked over the past 2 weeks. The first; “How are you feeling?” She’s been so very excited, and so for her sake, I’ve been feeling excited. And then, although rather uncommon, there are potential complications, and the thought that I could be placing my child at risk for these for an elective procedure, has left me feeling a bit sick at times. Doubt is a familiar foe on this parenting journey of both deaf and hearing children. Between oscillating from one extreme to the other every now and then, I have had a sense of perfect peace. Peace in knowing that this really is her choice, peace in knowing that her language development journey is well on track, and ultimately in knowing that actually, I’m not in control.
Another frequent question has been, “So what is the success rate?” I never know how to answer my lengthy monologue in just a few short sentence. Firstly, the defined success as “speech” is dependent on so many factors, but secondly and more importantly to me is, what is true “success”? If she doesn’t ever speak clearly but accesses sound, does that make her a failed case? So, as you can see there is no simple answer. This question also reminds me of one of my favourite quotes that happens to be proudly South African, “May your choices reflect your hopes, not your fears.”(Nelson Mandela) This choice is one where we hope she will access sound, just like her sisters do with hearing aids. We do not fear for her future, should she never speak.
On this journey, there are many times of making decisions concerning many uncertain outcomes, many meetings for accommodations, many times where we advocate, and many times of hoping that my lead is adequate. There are also times, which will increase as they get a little older, where I follow their lead. What is working for them? What will equip them to be their best? What choices do they want for themselves? This is often difficult, as it sometimes requires letting go of my initial ideas of how things might work out. A journey filled with surprises, scenic twists and turns whilst taking one step at a time. Our hope is centered on trust. Trust in knowing that all things will work together for our good.
It’s going to be a very hands-on next few days, followed by the “switch on” in about a month. Thereafter, a long journey of learning to to interpret the sound as meaningful information. More than ever, am I grateful for language. More than ever, am I mindful of the dynamic nature of this journey.