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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss


Monday, 03 August 2015 17:15

A Mum's Numb Despair to Pride in Short

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How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB.

First things first, get head around the condition, hate it with a passion and then decide on a plan of action and most importantly somehow tell your precious child the news that she is now deafblind and even worse, it's going to progress and there's no cure - DESPAIR.

Queue sleepless nights and the torture of keeping the nightmare of Usher Syndrome from Molly until I felt able to not only deal with my own feelings but hers too.

In my mind I had gone over a million scenarios of how I would tell her.  My husband happy to leave it to me!

I remember so clearly the summer after Molly's diagnosis driving to collect my younger daughter from school, it was a beautiful late summer afternoon, Molly was sat beside me in the front of my car and I asked her if she could see me, straight away she swung her head round to look at me and said "Of course I can" I knew straight away I had to tell her and quickly as clearly she had already started the natural adjustment!  "Molly can you look straight ahead and see me?" "No" she said.  That very moment I was glad she had little / no peripheral vision as the tears streamed down my face, boy was I quick to put on my sunglasses to hide my devastation of the reality.

That day I decided the time had come and I'd have to tell my beautiful child what was happening.

That night I tucked her into bed and later watched her sleeping, she looked so peaceful and so perfect and yet this devil lay within, I'd never felt such DEVASTATION.

A few more days passed, a few more weeks waiting for the right moment but doesn't the right moment ever come to tell your child she's going blind? NO.

Several months later it just came out, nothing planned, it just happened.

Molly was not phased at all, she listened and had little to say initially, her trademark smile still there. 

I told her the name of the condition and the basic outline of what was to come.  I also told her life was set to change and irrespective of what happens we had each other and together we would be strong and that whilst Usher Syndrome was responsible for her deafblindness what it would not do is take our memories and that we would begin making extra special ones and that is exactly what we have done as a family.

We have done so many things we definitely would not have done had it not been for the Usher diagnosis and every day brings the chance for new memories, it doesn't have to be things that cost money or to travel far afield some of the greatest memories are made simply by being with family and friends.

As Molly says "Usher Syndrome is not a death sentence, it's a challenge but that's all I know".

Let's say it's been a bumpy ride and I'm sure it will continue that way but as tough as it can be it is doable.

I have watched Molly grow, I've watched Molly struggle, cope, battle and become a beautiful young lady, inside and out but what I've seen more than anything in Molly is DETERMINATION to make a difference to others.

Molly turns 21 this month and as I look back I feel absolute pride at how she has grown and the things she has achieved at such a young age and there is so much more to come of that I'm sure but that's for another day.

Do I worry about the future?  Who doesn't?  I worry about all four of my children, isn't that what being a parent is all about?

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