MY DAUGHTER MY GIFT BY SUSAN ROSENTHAL

She came early. It was the May Bank Holiday weekend. Like most things in my life, I had left everything to the last minute. The baby-grows lay in their plastic packaging, nappies and bottles unpacked, toys and other essentials still to be sorted. 

We had gone to a party the night before. A close friend, living on the other side of London. “Such a schlep” I complained to James, my husband, as I stroked my huge belly. I couldn’t face forcing yet another pair of trousers and top over my bloated body.

“She will be disappointed” he said, “Let’s make the effort whilst we still can”.

That was the last of what I remember of those days, free and unencumbered.  We were newly married, enjoying our precious time together. Sunday brunches, long walks, trips abroad to friends’ weddings. Time suspended, purely for us. 

Motherhood derailed me in a way I was not prepared for. A friend described giving birth akin to being hit by a train and that is exactly how my body felt. On an emotional level I was veering off track too. After two quiet weeks with a jaundice baby that only slept, Aimee, as we finally named her, decided to wake up. Her lungs burst open and her shriek, like an animal in pain, arrived to stay, for the many months to come. 

Those first six weeks were like riding the scariest rollercoaster, most of the time I was upside down. James, when not at work, would walk Aimee in the buggy trying to quieten her cries, silently begging her to fall asleep so we could get some respite. I am sure he was privately relieved when on starting his new job he was sent to California for 2 weeks. In his place my mother arrived from South Africa to help out. 

A letter arrived that week. Aimee had failed her newborn hearing screen test and was referred to the Ear, Nose & Throat Hospital for further testing. As I burped Aimee for the hundredth time that day, not realising then she had reflux, I debated whether it was worth attending the appointment. We both looked at her beautiful face with the dark, sparkling eyes. She was engaged and alert, there was no way she could not be hearing us. Eventually we agreed we should follow protocol and attend the appointment. 

My memory of many things is foggy but I do clearly recall that day. I sat with Aimee on my lap, annoyed and irritated as the audiologist attached electrodes and other sound assessing equipment to her head and told me to keep her perfectly still or we would have to repeat all the tests. The audiologist was a young South African girl, dressed in a smart cream suit. She possessed that easy, warm charm and professional manner I had grown up with, confident in her training from a SA university. Yet I was angry, I expected more understanding from her. 

Thereafter there was the long wait for her results as we sat outside Dr Hendricks room. Aimee was squirming, I was trying to feed her and rock her to keep her from crying. The door opened, a tall German doctor ushered us in. He had a cool manner and blue eyes. He could have been my age. He seated us at his desk and in a very Germanic manner said these four words that I have never forgotten: “Your daughter is deaf”. 

I can still feel the tension in those moments. My mother scoffed and challenged him: 

“What are you talking about?”. 

She didn’t believe him. I was fixated on his manner, how I hated him at that moment. He tried to soften and explain more clearly what the test results had shown. My mother demanded:

“I want you to put that in writing!”

He was completely taken aback by her direct manner. He responded politely:

“We will send you a letter confirming everything”.

We left his office with a scribbled draft of Aimee’s diagnosis. I waited a few hours and then made the dreaded call to James in California. He went silent as I spoke then I heard a sob. Having had a few hours to digest the information, I took on the role of comforter: 

“It will be ok, we will get through this”. 

He thanked me for being strong in that moment. Through our journey he has often been the positive one, carrying me when I have been overcome by worry or fears.

Life took on a new direction after that. Mom returned home, I slowly started to understand how to look after a baby and James and I became a tighter team. I felt overwhelmed by motherhood but mostly deeply saddened by this news of my non-perfect baby. Would she ever learn to talk, go to school, have friends, get married? I distanced myself from my ante-natal group and tried hard to keep a brave face, deep down I felt flat, betrayed and very isolated from other new mothers.

Until one day I received a call from a pushy, assertive girl called Emma. She had been given my number by a family member. She has a deaf son, 7 years ahead, doing very well thanks to a speech therapy clinic in Oxford, run by a magical woman called Jacqueline.

“There is a waiting list, you must call them, insist don’t give up, go see them, don’t think about the journey-time or the money, you must go!”

I ignored her at first, but it niggled, I used to be a person who gets things done, I couldn’t just sit still. So we made the journey when Aimee was 5 months old. The speech therapy centre was a few miles from what is now Bicester Village. It looked like a collection of farm barns. We looked at eachother, why on earth were we here. We sat in the chilly waiting room gazing at pictures of children on the wall wearing hearing aids smiling back at us. It was a foreign world to us. 

Then this larger than life, statuesque lady, approached us:

“Hello I’m Jacqueline”,  she said confidently and firmly shook our hands. 

She was tall, with brown hair cut in a modern, short style. She had a warm smile, her eyes were gleaming, assessing who we were and whether we would be prepared to make the commitment to Aimee’s needs. She challenged us, asking questions about what we had so far done for Aimee. Were her hearing aids correctly set giving her the maximum access to sound? Did we check them daily? Were we talking enough to her during the day? Did we tell the Hospital exactly what we expected of them? We left flustered and beaten down, unsure whether we would ever return.

Emma did not give up on us. She persuaded us to go back, which we did - for four more years, every fortnight. In addition, we attended appointments in London with another therapy centre. The weeks were filled up with various appointments. But it was Jacqueline whom we have to be thankful. This marvelous woman who made such a difference to our and so many lives only to herself succumb to cancer a few years later in her early 50’s. Emma and I cried unashamedly at her funeral. This woman had so much work to still do, so many lives to change, taken so young. Her passing still brings tears to my eyes.

She was at the beginning of my Aimee journey. I left my job in the City when Aimee was one and a half. The nannies we employed were not taking these precious years seriously, Aimee needed to be talked to constantly. I devoted her early years to teaching her to speak. It was my greatest project and I did it with huge zest and commitment. I sat with her daily narrating the world, giving meaning to sounds, ensuring her auditory pathways were being developed at the same rate as a hearing child. Her beautiful brown eyes would look to me to make sense of  things and with each bit of vocabulary she developed I felt so deeply proud and fulfilled. 

For many years after Aimee was diagnosed my mother would not accept it. She insisted I go for second and third opinions, that I contact specialists around the world each time praying for a cure. Each bit of her doubt wore me down as I clambered to accept what I had been dealt and to get on with it. Over the years, she eventually mellowed and seemed to accept Aimee’s hearing was not getting better, in fact it was deteriorating further.

Aimee has faced every challenge thus far with such grace. Each time I think we have reached a wall, she climbs higher. I am in awe of her spirit and her nonchalant approach to adversity. I find often she is mentoring me instead of the other way round. Her hearing has reached a critical stage now when her hearing aids will no longer give her access to enough sound and we were on the brink of investigating cochlear implants for her. This project now at a standstill with the rest of the quarantined world. 

I have been seeing Dr Hendriks annually for the past twelve years. Our relationship with him has developed into a warm one where we can email our questions to him and he always responds promptly. He too has become a father over the years and more likely understands what I must have felt that day he delivered that earth shattering news. 

James often thanks me for being strong for him on the day he received that call from me. I knew he needed me to step up then. I have not often been able to step up for him or myself. Life took me on a course I had not planned for and often there are gifts en route if we are able to notice them. I tell this to myself now as we sit in quarantine, having the luxury of time, life’s greatest gift of all. 

You can read more in Aimee's Story