Esme. Our journey

We were so excited being pregnant, my mother was overjoyed beyond belief to finally have a grandchild on the way, she waited 8 years and cried with joy when we told her. My mother is deaf, but it never once crossed our minds that our baby could be deaf too. My mother went deaf at 5 after an illness. Well that’s what she was always led to believe anyway.

Esme, who was my first child and Paul’s second, was born in 2005, and while in hospital she failed the newborn screening and we were referred to audiology, but assured there was nothing to worry about as there was a lot of background noise from some construction works outside, however a couple of weeks later it felt as though our world came crashing down when we discovered Esme was profoundly deaf. My Mother had not had the easiest time in life and I remembered being embarrassed about having a deaf mother in my younger years. I felt my perfect baby girl was destined for the same fate and it broke my heart. I don’t really recall too much from the 2-3 months following this moment while I tried to adjust to managing hearing aids, dangers, what I could expect, what was available etc, all while trying not to let my mother see my hurt.

We decided to proceed with genetic testing and this became a difficult time for my mother, the tests revealed the cause of Esme’s deafness was genetic and caused by Conexin 26. Rare as both parents must be carriers, and then there is a 50/50 chance of a deaf baby. My mother’s deafness is caused by the same gene which was a shock to her as she would have been born deaf but no one knew. How could no one have known? It was different back in the 50s but how could her parents have not known? A question she could never ask as both parents had died several years before.

Thanks to our supportive TOD, we attended DELTA Summer School and it was a very valuable week.

By the time Esme was 2, we had long got over the shock of having a deaf child and we were focused on everything we could do to make sure Esme had every opportunity open to her. Esme’s speech was not developing well, and she was very aware and visual, so much so the audiology team struggled to be certain of her level of deafness. Further tests ascertained that she was a candidate for a cochlear implant.

Her operation was 8 years ago now and   We have had some lows. But the highs have made it all worthwhile for Esme. My mother struggles. Resentment is a strong word. Not the right word. But she struggles when she sees how different the support is for Esme when she compares it to the lack of or even non-existent support she received when growing up.
Esme is probably the most determined person I know. She isn’t letting anything get in her way. Speech therapy was awful. A rushed session with A4 handouts and boring images. I felt like I had been hit by a train after some sessions, I had no idea how Esme was taking it all in! I decided to adapt the notes to a play and talk session with Esme, to make learning fun. It was hard work and I spent a lot of time commentating on everything and talking a lot in play but it was worth it. Esme has perfect speech and if you can’t see her hearing equipment you would have no idea she was deaf. Esme’s teacher of the deaf once commented that Esme’s strength is also her weakness. Her ability to speak so well and her visual awareness are her strength. But it is so good that people then forget she is deaf, and forget she may not be following her lessons as well as they think. Our next hurdle, but we have jumped over many in the past. We will continue to keep jumping over them. If one falls then we find another way. We have never given up. People ask us why we took the ‘difficult’ route for Esme. My mother was my inspiration. I see how lonely she is, how she can’t get jobs she would like, how she does not always understand and how much she misunderstands. Even though I grew up with a deaf mother I never appreciated what it was to be deaf. She closed that world on us as she didn’t want her children to be bullied like she was. I wanted to give Esme the opportunities in life my mother never had, but to also try to help and understand my mother better also.

Esme has been passionate about horses since she was 2. We have no idea where that came from, but we enrolled her with the help of her godmother onto a local RDA  (Riding for the Disabled) group, it was like an animal therapy at first, to help with Esme’s confidence. All she asked for every week was to jump! The request came every week for years! There were little fun competitions and her competitive side really started to come out, she had to win. She was only 5! By 7 the school asked if Esme would like to compete at a regional competition – she was so young, but had the right attitude and it would start to give her confidence in competition. Esme said yes before the instructor finished speaking!! ‘I want to go to the Olympics mummy, I need practice’

We went along to the regional competition, Esme was so excited but nervous too. We were trying to let her know that this was a good practice for her and that it didn’t matter if she didn’t win, as all the other competitors were mostly teenagers  that had many more years practice!! But she was determined to get a rosette – she came second in her class and qualified for the national competition! We had not even considered there was a national competition or that Esme would place, but she was so excited ‘I am going to the Olympics Mummy!!!’

The national competition soon came around. When we first drove onto the grounds and Esme first saw the arenas she went so quiet. Stage fright set in and she was worried about doing well in such a large place. As with the regionals we explained that it was good practice but the competition was harder now so she should be very proud to have even got here. But still she was insisting she would win. When all the riders in the arena had retired for the evening Esme insisted on getting onto the arena (without a horse).  And practicing her routine so she had more chance to remember for the next day.

Esme only had 6 1 hour dressage lessons one to one prior to the competition and was entered into the introduction entry level at the nationals. Never have we seen someone so young focus on every word and every instruction so intensely. Esme’s language was behind for her age and needed real effort to concentrate on many instructions read out to her. She was exhausted after the lessons but loved every minute!!

Event day arrived and Esme was up and dressed, looking so smart in her dressage outfit – we were so proud of all she had achieved and her determination. Whatever the day held we hoped she would enjoy it and not be disappointed with the outcome. She looked so tiny against the 15/16 year olds in the same class she was competing in. Excitement took over from nerves and then we sat down waiting for our little girl to enter the arena.

Esme is such a fun loving, full of life, happy child who loves the outdoors, sport and animals! Horse Riding is certainly the perfect hobby for her!! The work the RDA (Esme is with the Abingdon group in Oxford) have done with her have really helped boost her confidence and we are so grateful for the people that volunteer and give up their time for the children and adults that ride with them. Without them horse riding would never have been accessible to Esme.
Esme rode confidently into the arena and didn’t seem to notice the world around her, her focus was incredible to see. We are no experts but it looked like a great ride, she seemed to do everything well and we think the preparation really helped. We then just had to wait for the results.
First!!!! The judge even came over to ask how long she had been riding as she was a star in the making. A look of shock when we said she had 6 lessons prior to the event. We were so proud and Esme was so happy! ‘See I told you I would win Mummy!!!’ Something we genuinely didn’t expect for her first competition! We don’t have photos on the day of her collecting her rosette as she had got disqualified originally, but this was reinstated a couple of weeks later after an appeal and evaluation if the rules. We are sad the day was tainted and we didn’t get to have that final photo on the day, but we were pleased it was all resolved eventually. The riding group presented her with her rosette at the stables where Esme rides and to Esme this was just as wonderful.

It has been a rocky road from the first time we were informed our baby girl was deaf, but it’s never stopped Esme doing everything she wants to do – such a determined character! She has had ups and downs with growing up and realising she is different to her peers as she is at mainstream school, she knows she has to concentrate more and needs additional support but she has learned to embrace this instead of seeing it as a negative and we are proud to watch her grow into the most beautiful, caring and dedicated little lady. If I could speak to the new mother I was, feeling heart broken all those years ago, I would tell her that determination and hard work is ahead but it will all work out OK. It will be OK.