Christmas

This special festive season has been quite challenging for several reasons. Most of our friends with 3 ½ year olds are having lengthy discussions about the nativity story, there has been great excitement over potential present wish lists, and for those that incorporate Santa Clause, the questions were endless! Much of the excitement, anticipation and intrigue has largely been created by the use of language. Words; meaningful building blocks that are pieced together to create concepts, questions and all the precious utterances of the very unique thoughts that carefree children may have. For our family, Christmas is a celebration of our Rescuer. As a result, the nativity story is a fundamental aspect to the season. Stories, up until recently, have been very difficult to convey and explain as a result of our limited vocabulary with the girls.

When hearing other children the same age, speak about Christmas, and share their innocent thoughts, uncensored wishes and wonderings with their parents, it is so tempting for me to withdraw back into a place of self-pity focusing on what I don’t have. We don’t yet communicate in full sentences and it’s still really hard for us to explain words like “precious” or “rescue”. It has required, on several occasions, for me to feel and acknowledge the pain of our current relative limitation of language, and then mentally list a few things about each child that I adore and rejoice over and then STOP comparing. I keep needing to remind myself that indeed Rome was not built in a day (a terrible cliché, but I actually think these exact words quite often.)

So when desiring to explain the nativity story on Christmas day to our girls, I had to ask myself a question, “What do we have to work with?” We have spoken language, words like “baby”, “mamma” and ” dada” are understood by all three girls, then we have sign language reinforcing the spoken and adding meaning to other key words like “star”, and the names of the other animals, and words like “king”, and importantly “Jesus” which is a sign that they are already familiar with. Then let’s think out the box and really embrace total communication… we can show them pictures in books and we can even act out the story!

After familiarizing myself with other key signs and trying to pick a moment aside from the excitement of new toys, we decided to tell our precious three, the story that has inspired this special day. Our three girls are natural actresses. Hadassah, generally wins the Oscar in our family, but both Tahlita and Eden are close runners up. They also love book time, so as soon as we rounded them up and showed them that we were about to read together, the delight on their faces got me excited. We read through the nativity story once. Kept it simple and used lots of signs and facial expressions… then the fun started. Each of the other four family members had a role assigned (I managed to escape this by being the director!) The obvious choice for the trusty steed, the donkey, was Dad! Hadassah wanted to be Mary, Tahlita was Joseph (who eagerly led the donkey), and little Eden played the star role of (a somewhat concerned) baby Jesus. All the hundreds of fluffy toys were transformed into the various stable animals. I spoke and signed through the story very simply, and the girls loved it! What we didn’t anticipate, was that after the first round, the 3 of them had decided that they each wanted a turn of being the “mamma”, “dadda” and “baby”. So the nativity story was narrated and directed 3 times…. Nothing like reinforcing the message! The funniest was when Eden was Mamma Mary and Hadassah was the giggling baby Jesus, but we all had a lot of fun, and for the first time, we had a chance of engaging our children with concepts and stories that are important to our family. Sure, it was super simple, but it was a start. I sometimes think, that we tend to complicate things too much anyway. Simple and humble yet precious, honest and a moment worth rejoicing over.

Next year, we’ll have even more language that will give us the tools to add more details, and this may even turn into a family tradition… a Christmas day family play! At the end of the day it’s the message behind the actions and costumes that I hope will sink into their hearts. The message is simply that of LOVE. And it’s not only words that convey this, and it’s not only Christmas, either. It’s the deep breath when frustration levels have reached a high as a result of limited understanding, the warm snuggle in the morning in spite of being kept awake all night by a restless child, the smile when exhausted and the, “Come my darling, let’s all go and read together,” when I’d do anything for half an hour to myself. I’m so often reminded that it’s my attitude and actions towards them conveying that they are valued and loved that speak far louder than any eloquent words. LOVE; that’s the meaning of Christmas, the purpose of the Bethlehem Babe and an action that is ultimately not limited by vocabulary.

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Wet shoes

Once we learned of the twins hearing loss, one of the major considerations that we had to make was by what means we were going to communicate. Initially, my assumption was that amplification with the use of hearing aids would be the answer. “Turn up the volume and they’ll be able to hear what we say,” kind of reasoning. That together with a bit of lip reading here and there would do the trick. Well, so I thought. In the initial stages of grief, I was trying to hold onto my previous perception of “normal”. An attempt of preserving my illusion of still being in control of my life and situation. The idea of teaching them sign language was not a place that I wanted to go. That would make them “deaf” and they weren’t, they just had “hearing issues”. Denial: a normal and very necessary, yet fruitless phase of any grief journey.

Once their hearing aids were fitted, we were all hoping to see a sudden marked improvement in their spoken language. Hadassah did start responding to sound more and did start trying to vocalize a fair amount. She’d try so hard and get so frustrated that in spite of her best effort, she still couldn’t make herself fully understood. I then started to appreciate that they needed to learn to listen and learn what certain sounds actually meant. So at every opportunity, when there was an interesting sound, like a noisy bird, or ambulance siren, we’d stop, draw the attention to the sound and try to help them to listen to and engage with it. There was definitely some improvement, even just after 4 weeks of practicing listening.

Little Tahlita was endlessly frustrated. She’d try to communicate something and fail, end up in tears and often on the floor kicking and inconsolable for a while. Then after literally going through a spectrum of possible causes for this outburst, from being hungry to wanting a dirty patch on her beloved teddy cleaned, we’d know we’d ‘hit the nail on the head’ when whatever we were trying in order to meet her need at the time, resulted in hysterical giggling. An expression of relief that we had finally understood her. The aural –oral approach to communication was not working for Tahlita. Granted, they had only had their hearing aids for a short time, but I finally reasoned that one, I did not want to waste further time in their acquiring language and two, my relationship with Tahlita in particular, was threatened by our inability to communicate and the frustration that followed.

I’d spend hours a day trying to teach them the words for colours, numbers and common nouns like animals. This was a fairly slow process. We just could not get colours right. The only colour that seemed to make an impression was “yellow”, and so we’d start with yellow and then try to move on, but that’s where it always ended. This is probably because their dad’s favourite colour is yellow, and so they have been exposed to the word associated with his clothes and other things of his, since they were very little. Hadassah’s efforts to vocalize, saw her acquiring new words at a faster rate than Tahlita, but most of them were not pronounced very clearly, and she often got the names of things confused. Frequent offenders were the words “moon”, “balloon” and “blue”. In her little world, a “balloon” lit up the night sky and she was so excited to choose a “moon” at a birthday party. I started making up signs to associate them with words to help the process. They were just gestures, not really official sign language signs, which again would guard them from being labeled “deaf” in my own mind. Some of our gestures e.g. that for “ice cream” and “giraffe” incidentally turned out to be the same official signs in South African Sign Language (SASL). And what we were finding, was that the combination of signing and speaking, was working! After ONE word “sandwich” of “ice-cream” (meaning, we’d say the word, then sign it, then repeat it orally) Hadassah cottoned on to a good thing. The first time she said “ice seem” whilst signing it, her efforts were celebrated! The reward – a sweet frozen treat for all 5 of us! No surprises that “ice- seem” became her new favourite word, which was usually accompanied by her two sisters’ excited bright eyes and their signing for ice-cream.

It was really only after Eden’s diagnosis, that my “acceptance” of my lot as a mom of 3 deaf kids took place. Some people may term them “hard of hearing”. These terms, I find, can be confusing, especially to friends and family who are trying to decide if their hearing loss warrants anything out of the ordinary. The bottom line is – their ears don’t work. With hearing aids, their access to sound is better, to what degree, we’re not yet sure. Will this progress to bilateral profound deafness? Maybe, but maybe not. Will they have similar access to and perception of sound? Again, I’m really not sure. So to keep things simple, and as a part of the “acceptance” process, I call them “deaf”, as they each fall within the spectrum of deafness. Another surreal moment involving this initially intimidating word, was when we visited the deaf school for the first time. At the entrance was a big sign that called it a “school for the deaf”.

D-E-A-F

A very much “Welcome to Holland!” moment. This was my new reality. It was only after meeting other deaf people, that this word didn’t seem so scary. My girls are deaf, and it’s okay. With accepting this fact, came my acceptance of embracing a total communication approach which involved embracing SASL. (Total communication is basically a mixed means of communication; spoken language, sign language, gesturing, pictures etc.) Initially, I was extremely daunted by the task of learning something very foreign. After a bit of an emotional wobble, I decided that we’d continue to take one day at a time and one sign at a time. So we started with the sign “flower”, as this had been Eden’s favourite word. Every day we learn a few more. I am still a complete novice, but am now enjoying learning how to sign. I’ve also had to deal with a few pride issues of “looking silly” as obviously I get signs wrong at times, or have to stop and think of what my next word looks like, or sometimes I just suddenly forget one that I thought I knew the night before. Every language takes time to learn, sign language is no different.

After 5 short weeks at the deaf school, they learned their colours!! It’s now become a fun game. Each time we come across a group of things that are various colours, the twins get so excited for me to test their memory. Little fingers jiggle away whilst words are also shouted out. This happens at an incredible speed! Concept colours: ACHIEVED! Their use of numbers purposefully, and their acquisition of common nouns, has accelerated since we have embraced this total communication approach. It’s so cute to see them now teaching Eden her colours, and really, this hasn’t taken very long. It’s also very interesting to find, that the more Tahlita signs, the more she speaks. When either of the twins are feeling shy or uncomfortable, they opt to communicate with signing. Eden loves signing, “thank you,” so often comes across as the most well-mannered toddler on the planet.

A very special moment for me was only 2 weeks after starting to learn to sign. We were in the shopping center, and Tahlita started fussing. Usually this spirals into a mess as I described earlier. I took a deep breath as I felt our family attracting the attention of other shoppers. I looked my daughter in the eyes and signed “What?” With a frown on her face and a look of distaste, she made two sequential signs: “shoes” and “wet”. It had been raining, and the dampness of her closed shoes had finally soaked through to her socks. Her shoes were wet, and she didn’t like it. In an instant, the problem was identified and addressed. Tahlita’s frustration eased, and the realization that she was understood brought a confident smile to her sweet little face, and an even bigger smile to my face. We had just communicated effectively for the first time, even if it was just about a pair of denim shoes.

One of my biggest challenges on this journey, is that of being flexible. This is not something that comes easily to me. I’m a planner. I am an expert list maker, and I’ve even made lists for my lists. Being able to neatly “tick” off a box is something that brings me pleasure. Bizarre, I know! It would be fair then to describe myself as fairly inflexible…well up until this new chapter of my life, anyway. As time goes on, the girls’ hearing may deteriorate further, and signing may be a dominant means of our communication. Their amplification may be very effective, and a mix of spoken and signed language may always be the way our family communicates. Hadassah may excel in oral language and choose not to sign when communicating with me. I just don’t know what each of their individual paths may look like, and I have the task of creating some kind of common ground. I’m going to need to become an expert at being flexible. “As flexible as fluid,” is a motto of an organization that I admire… as flexible and adaptable as fluid!

Our 6 little friends…

We decided to get the girls hearing aids to assist them in accessing sound.  Now, something that I’ve only just learned to appreciate, is that hearing aids to ears are not like glasses are to eyes.  They don’t perfectly correct the way that the person hears sound; often sound may indeed become more accessible, however may still be distorted.  As a result, they may help the girls to hear sounds and respond to sounds like music and loud noises and even our voices, but we are not sure what their quality of hearing is and will be like in the future, and it may very well be different for each of them.  Hearing aids also amplify all sound, including background noise and “white” noise that may also blur the clarity of the speech that they hear.  So, although often wonderful devices, and although we may notice an improved response to sound, the girls’ assisted hearing will never completely be like that of a hearing person.

May I take you through the first few weeks of getting our hearing aids… We chose baby pink as the colour as in the girls’ eyes, everything has to be pink and pretty.  Initially we needed to consider whether we wanted to get them the same colour, and after a few incidents of watching the tug-of-war over different clothes, shoes and toys, we decided to minimize the potential chaos (and damage!) and get them identical hearing aids.  Choosing the type of hearing aid was quite a confusing time, as we were initially recommended the most expensive model which then, after second and third opinions realized that they would be unnecessary for the girls, as special features which add to the cost e.g. blue tooth, are switched off in paediatrics.  Eventually with the advice of a paediatric audiologist, who is also a friend, we chose what we believe to be the right aids for the girls for now.  These little gadgets are really pricey, and seriously could be swapped for a pair of good sized diamond earrings for each girl, if hearing aids weren’t required.

The day to fetch the twins’ hearing aids arrived, and it really did feel like “D-day”.  I was anticipating lots of fussing and so said a good few prayers!  Wow, it was a morning of information overload!  How to put them in (which I found very difficult at first), how to clean them, put in the batteries, work the “tamper proof” mechanism, how to keep them moisture free, how to replace the filters if they fell out, how to clean out the tubing, how to test them every day…and on and on and on.  Would this ever feel easy?  The first thing we did when we got home was let the girls choose stickers to “mark” them with, so that I wouldn’t get confused.  Hadassah chose red hearts and Tahlita chose little blue flowers.  They were very excited with the whole process.  Then started the painful initiation part, which felt a bit like the extreme “potty training in 3 days” that I had successfully done with them when they were 22 months old.  I thought I’d try to use the same principles that I had learned through that process.  Firstly, identify that it was going to be painful, as to just prepare myself, and then commit to using no negatives! No “No’s!” No shouting, not frowns no head shaking.  Just tons of positive reinforcement and making friends with the hearing aids.  So… in the aids would go for 5 minutes… then they’d start fussing… off outside to feed the birds or look for flowers to distract their attention… then I’d remove the aids for a few minutes to give them a break… then the cycle would start again.  Whenever they were taken out, we’d kiss them and thank our new “friends” for helping us to hear, and before putting them back in, it would involve an exaggerated smile and excitement at seeing our long lost friends again.  Yep, this was quite a mission, especially that there were four at once, but we persevered.  Tahlita had a bit of a rough start as her one ear mould was hurting her and then needed to be trimmed.  We had to do a bit of extra winning over after her experience, but after a week or two she was wearing them all day. Gratefully, Hadassah, wore them full time from day three.  In the first three weeks, I visited the audiologist 8 times with problems.  They were always very accommodating, but I could tell they dreaded hearing my voice on the other end of the phone to make yet another appointment.  Four months later, as soon as they wake up, they ask for their hearing aids! Hallelujah!  They’re then slipped into place in two ticks.  They need to have new ear moulds made every six months or so as they outgrow the old ones, which isn’t a great process (more about that another time) and hearing aids need to be replaced roughly every five years.

Eden got her hearing aids a few weeks ago.  I wasn’t sure how this was going to go, as she’s my little fire ball.  She was very good, and when we got home to greet her sisters whilst sporting a pair of baby pink aids for the first time, she had a very satisfied look on her face, as if she was finally part of the gang!  The twins were also so excited to see her hearing aids.  They came around her and hugged her and there was great celebration, as this little chubby cheeked cutie, beamed with a sense of belonging.  Later, I found Hadassah giving her a “pep talk”.  She had her hands on her little sister’s shoulders and very gently, yet confidently, was jabbering away (in her own language) interjected with the odd, “ok?” whilst looking at and pointing to her and Eden’s hearing aids.  Eden seemed to appreciate her big sister talking through things with her.

So another initially daunting aspect, has just become part of the daily routine, and doesn’t feel like much of an extra chore anymore.  Our six little pink friends get kissed and thanked before bath time, wiped down and stored in their overnight moisture absorbing jar, whilst the little round batteries have their power checked with a special device, and stored separately.  The next morning, batteries in, hearing aids checked using a little tube plugged to the aid at one end and then in my ear at the other end.  After the 6 “testing-1-2-3’s”, we’re good to go.  Eden still takes hers out from time to time, and they’re the first things that go when she’s throwing a tantrum! It also helps to have hearing aid ‘police’ in her two older sisters who eagerly report any mischief!  On a whole we’re getting the hang of it.  It has been a valuable lesson in patience!

Giving honour where honour is due…

When someone has been particularly selfless and has gone the extra mile, I firmly believe in honouring them as a way of saying “thank you”. I’d like to use this post as an opportunity to do just that.

Four different audiologists later and nearly 6 weeks into my journey, I found myself feeling incredibly alone. Other than the odd appointment to discuss hearing aids, we had no support from anyone familiar with anything to do with the deaf. We had not been referred to any form of support structure and this journey ahead seemed like an impossibly daunting task. A family friend, in a kind attempt to show us compassion went onto the internet and printed out a few pages that she had found. She placed them in a plastic folder and dropped them off at our new home where they landed up on my bed side table. This had happened without my knowledge. On one particularly low evening, I mentioned to my husband that I’d never felt that alone before, and would do anything for just a little support, but where to start looking? Feeling disillusioned by my circumstances, I decided to best escape reality by having an early night. Getting into bed, I noticed a little green folder on the table, and decided to page through it. Our friend had discovered a South African early intervention programme, called HI HOPES, which supports families of deaf and hard of hearing babies, and had printed out a few information pages about them. Could this possibly be the answer to my prayer for support? I came across a contact number. It was the mobile number for the director. It was now nearly 8pm, and I so wanted to investigate this further, but also didn’t want to bother anyone after hours, let alone the director of all people. I was too desperate to wait, so sent a text message to the number, just asking for a contact person in our area. Within a few minutes I received a reply from the director inviting me to call her then and there. I did, and that was one of the best decisions that I’ve made on this journey thus far. On the other end of the line was an expert on deafness. But not one that thought too much of herself to connect with a broken-hearted mom. She listen empathetically to my story, explained that this was the very reason that she was born and offered to be my 24 hour call line. The call ended, and something in me had changed. I had a spark of hope. I rushed over to my husband to tell him about what had just happened and for the first time in a while, had a huge smile on my face. I had support! We were no longer alone.

The next day, I was referred to the coordinator of HI HOPES for our area, and subsequently had a “parent advisor” assigned to our family. This is a person who has been trained by HI HOPES to be an interventionist in the lives of a family of a deaf/ hard of hearing child. They do fortnightly visits to your home and provide unbiased information about all your options as a parent. You are also given ideas and “homework” that provide the tools as well some direction in building communication skills and language with your child. It’s so comforting to have someone there to guide and prepare you for your life long journey as a parent of a deaf child. Their services are completely free of charge, and although they are based in Johannesburg, they are reaching out to many other areas of our country, such as the area where we live. Having this service and building a relationship with the interventionist is an incredible blessing that really makes a difference to the lives of families of deaf children. Our interventionist is Naomi. She has been incredibly kind and encouraging, and it has been wonderful to get to know her and have her support over the past few months.

I think that one of the reasons for their success in making you feel truly heard and understood as a parent, is the compassion and passion of their leadership. Professor Claudine Storbeck, is the director that was so kind to me on that lonely evening. She is a servant-hearted leader, and I’m yet to meet anyone with as much passion about anything as she has for the deaf and families of the deaf. A real life superhero! I have actually taken her up many times (at very inconvenient hours) on her “24 hour call line” offer, and each time ended the call having had my “hope tank” topped up. I am humbled and honoured to have her walking along side us on this journey.

HI Hopes has gone the extra mile for us. I mentioned before that I needed to travel to Johannesburg for Eden’s ABR test. The audiologist, Sel, from HI HOPES accompanied me to the test. She was a very real presence of calm in an otherwise turbulent day. Although I was on my own with my baby in an unfamiliar city, I felt like I had the support of family, just by her being there. Claudine also met up with me whilst Eden and I were in Johannesburg. Again an unbiased voice of compassion and hope. I am eternally grateful for everything that they have been to us over this time. If supporting families like ours, is something you’d like to consider, HI HOPES is making a real difference. Take a few minutes and look at their website: http://www.hihopes.co.za. A quote that I think applies to this team: “It’s easy to say, ‘It’s not my child, not my community, not my world, not my problem.’ There are then those that see the need and respond. These people are true heroes.”

There have been other amazing people who I’ve crossed paths with which I’ll mention in turn. Our families have been incredibly supportive and we have also felt a presence of Peace and Perfect Love that has been tangible, especially at times when I’ve felt most alone. And I don’t for one moment, consider the relationships that I have made, as coincidence. We have also found an incredibly caring and family centered audiologist/SLT, Julie Cardona. Her sincere empathy and compassion for her clients, sets her apart as a hero of the audiology world.

In honouring my heroes as well as my inspiration, my 3 girls, my desire is to be of support and a voice of hope to other parents out there who may be feeling overwhelmed and alone in a world that they too, were unprepared for.

Eden’s Journey

From the previous posts, you may be a little confused. I am the mom of 3 deaf girls, but have also said that in the middle of this year, I was grateful and confident that Eden could hear. Let me explain…

Our 3rd daughter Eden is 21 months younger than her sisters. My pregnancy with her and her birth, were again, largely uneventful. She too, was not offered early neonatal hearing screening. Again she was “colicky” which was challenging, but otherwise achieved her developmental milestones on par for her age. Actually, her language development was ahead of the pack. Her first word, “hot” was at 5 months old. She said this regularly and quickly accumulated new words, and at one year old had a vocabulary of at least 40 words that she said clearly and often. I would never have guessed that she had hearing loss.

Once the twins were diagnosed with hearing loss, it was obvious that we would at least need to get Eden screened, if only for completeness sake. I’ve mentioned before that the OAE screening test requires the child to be quiet and still for about 30 seconds. When you’re 18 months old and a stranger is poking a foreign object in your ear, 30 seconds may as well be 30 hours! For Eden this proved to be an impossible task for the first 4 attempts. Amongst all the chaos of the move and her sister’s new diagnosis, Eden was certainly not the center of attention in our lives, and as a result, subtleties largely went unnoticed until I really started needing to know whether she could hear. Considering that I had now become hypersensitive to anything and everything related to ears, I started to become incredibly observant to Eden’s behavior and response to sound. What I was noticing, terrified me. She had stopped saying most of her 40 words. In fact, she would only use about 10. Her favorite word had been “flower”, and I realized that I hadn’t heard her say this in a while. Now, one of the strange things that Tahlita used to do which initially got me considering a diagnosis of hearing loss, was that she often used to silently “mouth” words. I now realize that was because she thought that the rest of us were silently moving our lips with facial expressions and gestures communicating the majority of the message. Just after our move to the city, a friend observing Eden exclaimed, “Oh cute! She’s copying her sister. She’s mouthing!” I didn’t find it cute at all, and my suspicion was eating a hole in me. Eden also started “ignoring” us. Huge alarm bells!! Again, as the result of all the trauma, my emotions and thoughts were completely muddled. Part of me reasoned that understandably, I had just become paranoid, and that God would not be so cruel. But I needed to KNOW.

I took her to an audiologist for a hearing screen and voiced my concerns. I managed to get Eden to fall asleep so they could perform the test. Initially the test showed no response to the stimulus (indicating that something was wrong). The machine that was being used however, was somewhat faulty and I could tell that the audiologist was getting frustrated with it. They explained that she probably just had an ear infection and that we should bring her back in a few months to have her retested. I knew that she did not have an infection and I also knew that the anxiety of not knowing whether or not she could hear would kill me, and so I couldn’t wait that long. I also explained that I had well learned my lesson, and that if there was hearing loss, I wanted to act on it and not waste further precious time. The audiologist could sense my distress, and so in spite of a now grumpy, awake Eden, kindly agreed to repeat the test. After much effort, the audiologist handed me a short print out of “2 echoes”. They informed me that the results meant that she had passed the test, had normal hearing, and that we should just monitor her language development. You’d think I’d have been ecstatic. I wasn’t. I thanked them for their tremendous effort (it really was mammoth, as I’ve mentioned that this child knows what she wants and doesn’t want in life). I drove home torn with the reality that the professionals said that she could hear, but I knew in my gut that the test result that day, couldn’t be trusted.

A week later, I was in a speech therapy session with our twins. Our speech therapist is also an audiologist, and I had mentioned to her that I’d like to have Eden’s OAE repeated. She was very willing to help out and we were going to try to come up with a plan to get Eden sleeping deeply. That day, Graeme was not at work and had taken Eden for a drive to the shop with him. She had fallen asleep in the car! He rushed over to the speech therapy practice so that we could attempt the OAE again. I was happy to continue the therapy session with the girls while Graeme and Julie (the SLT and audiologist) attempted the OAE in another room. They were gone for ages. I just knew that it wasn’t going to be good news. Indeed it wasn’t. In spite of being in a deep sleep, and multiple attempts with a reliable machine, Eden had conclusively failed her screening test. Consequent attempts at having her in the audiology booth to assess her response to sound failed, as she was very scared of the small dark room. I ended up needing to take her to Johannesburg for an ABR test under sedation. That booking was made for 2 weeks later. Another painful two weeks of trying to account for all her symptoms as an attempt to hold onto a thread of hope, that her hearing was normal. I just couldn’t contemplate having 3 deaf children.

The day of her ABR confirmatory test came. I did not sleep at all the night before for sheer anxiety. The actual testing itself, was a very different experience to that of the twins. It was done as an outpatient procedure in a sound proof booth with an anesthetist ensuring that she was adequately sedated. The audiologist was wonderful, compassionate and kind, and another audiologist, an absolute angel from an organization that I’ll tell you about soon, accompanied me for the duration of the testing. On a whole, I couldn’t have asked for a kinder experience. After over 2 hours of testing, I was called in to have the results explained – at long last I’d have an answer! They didn’t need to say anything…again, the little jar of ear impressions on the desk told the story. A sense of numbness overtook me as I considered for a moment that this may just be all one big nightmare that I’d soon wake up from. But it wasn’t. Eden’s hearing loss was similar to that of her sisters’; profound on one side and moderate to severe on the other. Devastated by the news and yet relieved to at least know the truth, we left the audiologist’s rooms. My mind was now spinning with thoughts and questions. What does this mean for us? This is then most likely a progressive hearing loss since she could definitely access sound as a smaller baby. Am I going to cope with 3 deaf kids?

The next 24 hours before my drive back home was a profound time of acceptance. God had NOT been cruel to me. My daughters are beautiful, intelligent and determined, and somehow, in some kind of crazy way, this journey was going to turn out okay. More than okay! A sincere realization that I have been blessed beyond measure, and that I was not alone on my journey as a parent of the deaf, melted the frozen grasp of fear and hopelessness. Life would need to be embraced one day at a time and I would need to have faith that our futures were in much bigger hands than our own.

The day of confirmation…

I mentioned previously that after Tahlita’s screening test which suggested that she had hearing loss, I had to book further tests in the nearest city for both the girls. Again, due to our distance away from the city, things weren’t simple! I managed to get an ABR/ASSR appointment for 2 weeks later; a process where Tahlita was going to be sedated using some oral medication, as having her anesthetized for the procedure, would mean another separate trip altogether just to see the ENT prior to reserving theatre time for the procedure. I was assured that this was done often and would be fine. At the same time we would take Hadassah for a screening OAE test (a much shorter and simpler screening test that also relies on the child being silent and still) to see if she perhaps also had hearing loss. It was a very long 2 weeks! I needed to know if my daughters could hear. In spite of many prayers that we would leave the audiologist’s rooms that day with a final conclusion (and even more prayers that the conclusion would be that they had normal hearing) the sedation failed, and so further testing that day, had to be aborted. They were going to need to be fully anesthetized in theatre. I was desperately disappointed as I was so anxious to know then and there! We made the long trip back home, our questions still unanswered, and spirits very low.

Our theatre booking was for 2 weeks later. Another painful wait. Finally the day came and at long last we were going to get answers. I accompanied both girls into theatre where the anesthetist received them and gassed them down. Tahlita was first. The theatre staff were all very friendly and chatty, my little girl was very brave as she lay on the theatre table. Once she was unconscious, I left to wait with Hadassah. After an hour, Hadassah was called, and again I accompanied her to theatre. This time the theatre staff were quiet. I got a few sympathetic looks, as I entered the theatre room where Tahlita had been just a few minutes before. I noticed a little specimen jar with 2 little yellow blobs that looked like ear impressions on the audiologist’s trolley. My heart sank. There must be a problem if she’s taken impressions! I returned to the waiting area. Our ENT came to see us, and with a big sigh, explained that Tahlita had significant sensorineural hearing loss. He said that he’d be back when Hadassah was finished to give us her results. Already devastated by the news about Tahlita and trying to hold myself together, an hour later the ENT entered our waiting room for the second time. I can’t remember much of the next few minutes as my world stopped spinning. Hadassah’s tests were the same as Tahlita’s. My babies were both deaf. He continued talking about cochlear implants, and our running out of time for language development; all too much information for that moment.

An appointment was set up for the next day to discuss the results with the audiologist. We left the hospital, morale at its ultimate low, the worst day of my life by far. Nothing else in life mattered as the future that I had envisaged for them was gone in an instant. Well, so I thought. Guilt was also a predominant feeling, that we hadn’t had them tested earlier. The next day in the audiologist’s office was the most surreal experience. We were told that they both had profound hearing loss in their right ears and moderate to severe loss in their left ears, and that Tahlita’s was a little worse than her sister’s, and there was a very real possibility that it could be progressive. We were asked what type of hearing aids we wanted and what colours we wanted to choose. Colours??? I didn’t want hearing aids at all! This was not happening to me! All very confused and still in a daze at the whole experience, we left for our last trip up the mountain to our rural home. We would have to move to the city to access care and resources for the girls, and we would have to do so urgently. On the same day, we made the decision to leave our friends, jobs that we loved and our first home as a family, for the unknown.

That next month of packing things up, was a time of feeling very alone and a time of very real grief. My daughters were essentially the only deaf people that I had ever really known. This was a world, that at the time, I did not want to be part of. And what would become of all my prior dreams and hopes for their lives? In another breath though, I was relieved to have a diagnosis; a reason for their delayed speech, and consequently something to work with.

I look back now, just over 4 months have passed from our first very dark days after diagnosis. I’m stunned by the change in my own heart. I can take no credit for that change, but am eternally grateful for the support and help that has crossed my path. I have learned a tremendous amount about being a relevant health professional. My encounter with grief regarding my own children has changed me from being the ordinary doctor that shies away from the cries of a grieving parent (not from a place of not caring, but rather a place of feeling awkwardly uncomfortable) to being drawn to it. Just a warm smile, or caring touch can melt the icy feeling of being alone. I am also filled with hope about our future. The other day I came across a saying that made me think, “Yep, that is what I’m counting on!” It read, “Before something great happens, everything falls apart.” I think that it’s the realization that I’m no longer in control of my life (of course I never really was, just liked to believe this illusion) that has allowed me to take two steps back and just watch. It has been quite an incredible view. I’ve seen the dark clouds of despair part to allow the warm rays of hope (and joy!) shine through. HOPE. What a beautiful word! A friend of mine put this up on Facebook; I think it sums it up just perfectly: “Hope expects what faith can see.”

I’ve also come across a fairly well known poem called “Welcome to Holland” by Emily Perl Kingsley. It basically uses the metaphor of planning a trip to Italy to explain what life with a child who has a disability is like. Essentially, you’ve been looking forward to this exciting trip to Italy; you’ve learned Italian in preparation and done a lot of research and preparation for this much anticipated holiday. Then when your plane lands, the steward says “Welcome to Holland”. Holland? But you didn’t want to be in Holland! You weren’t prepared for Holland! Everyone is talking about Italy! Yep, it’s exactly like Emily describes. And she goes on to encourage that Holland isn’t all that bad, that there are beautiful things to see in Holland and interesting people to meet. I can also testify, that in my short time in my “Holland”, the deaf world, I have met with greatness that I never knew existed, inspirational heroes have become my friends and I have seen the beauty and sincerity of the human spirit, that I may have missed amongst all the excitement of “Italy”.