A Marathon of Words | Own the Equinox, Day 10

September 3, 2015

by Chloe Joyner

Chloe lives in Manchester, England, and is mum to 2 children (son Emery, aged 8 and daughter Xanthe, aged 5). Xanthe was diagnosed as profoundly deaf when she was 2 weeks old, and with Usher syndrome at 18 months old. Chloe describes her learning journey since each diagnosis as having been steep! Alongside voluntary work for various hearing/vision-related charities, Chloe works as a freelance nutritionist, specialising in children's nutrition.​

Photo of Xanthe, age 5

Everyone in the Usher community can probably remember the exact moment they became a member of it. They don’t need to look up the date, it’s forever etched somewhere deep inside. For me, it was the 24th March 2011, when I learnt that the reason for my youngest child’s profound hearing loss was a faulty MY07A gene (Ush 1B), and that deafness would not be the only challenge our little girl would face.

As someone who usually finds the positive in things, this Usher diagnosis was a tricky blow. Having assumed I’d rally in the same way as I did after the shock of the deafness diagnosis, I was surprised to find that the road to acceptance was more complex this time round. Living with the constant threat of change and loss of vision has been something I have struggled to find my peace with.

It is fair to say it was fear that defined the instinctive response I had to my daughter’s Usher syndrome diagnosis, and it is fear that has been the recurring theme ever since, as I have tried to envisage the path ahead for her amidst the unpredictable course and challenges of this disease.

Even now, 4 years after diagnosis, fear can still grip me, unexpectedly, as I go about my day. It arrives as a frozen sense of panic in my chest and might come because of something I see or hear, or it might just choose to descend for no good reason. I’ve learnt to accept that it will come, and learnt to be grateful that it goes away. Of course, it doesn’t go away because the reason for the fear is resolved. No, that would be lovely, but it’s not true. It goes away because the phone rings, or I’m asked to find the millionth lost sock of the day, and life resumes in the way it usually does. I quickly become reabsorbed with the sock search, but know at the back of my mind that the fear will return. When it does, if I’m lucky, my perspective will have shifted on a little to make me more resilient, or even to have an answer for some of the questions it leaves in its wake. I’m proud of myself for having realised that these moments come to us all, and aren’t a reflection of how strong we are. They reflect the iceberg of emotion inside, and it’s only natural for me to stub my toe on it occasionally.

But how about if the fear could go away because there was a more permanent answer to the questions which Usher syndrome creates for us all? The questions associated with life-changing loss, and when, why and how. A tangible, proven, credible answer, which is able to address the root of the fears and remove the threat of loss from our children? It feels hard to lay myself open to such hope, but the power and commitment of this community helps me to believe it’s possible and to believe that we can be part of the solution.

We need Usher Syndrome Awareness Day to show others that belief – to show others what fear has driven us to do, and how we won’t rest until the barriers which our children and community face are tackled, each and every one.

For me as a parent, the Own the Equinox day is about me owning that fear, taking control of it and channelling the energy it generates into something more powerful; an enabler for good, which can take us to places, introduce us to inspirational people and transform us in ways we could not have envisaged or chosen before.

In the people I have met since our Usher journey began 4 years ago, I have witnessed immense courage and unrelenting determination, not just in spite of the fear of Usher syndrome, but in many cases because of it. Until a cure is found, we have no option to run away from the reality of Usher syndrome, and so we have to find the strength within us to stand up to the fears and break down the barriers which help fuel them.

Photo of a note in an envelope that reads "Dear Xanthe..."

In the build up to UshDay I am tweeting (@JoynerChloe) excerpts from a love letter that I am writing to my daughter, about the hopes and dreams I have for her in spite, because and in the face of Usher syndrome. I hope it will give you an insight into the positivity which can flow from fear, and how a community united by fear is challenging the very basis of it by searching for a cure and providing support to each other to improve and enrich lives lived with Usher syndrome.

So whilst others are undertaking a marathon of physical endurance to mark the countdown to Usher Syndrome Awareness Day, mine will be a marathon of words. 26.2 messages to our beautiful daughter that I hope will convey and encourage positivity, courage, honesty, respect, understanding and most importantly, love. I don’t yet know where that will lead me, and what the opportunity to reflect will unearth, but I’m committed to being open to the journey, and I hope it gives some insight into the hopes dreams and fears of a parent within this #Ushfamily. We’ll be honouring #USHEQX with a personal donation this year, and look forward to taking on different challenges each year to see what is possible when the whole Usher community joins forces, until the day comes when the only thing which unites us is the friendship that we have been lucky enough to create on our journeys together.

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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