The sun would shine we'd go out to play
Ride our bikes or play on swings
We really could do wonderful things
Run and play, just play all day
Now when the sun comes out to play
I must hide my eyes away
The glare is painful it makes my eyes weep
I hide behind dark glasses as if to sleep
My eyes are open but little can I see
Usher Syndrome, Deafblind is me
Hearing is a challenge but hearing aids fab
Seeing more difficult without Unis my lab
Life is different, challenging and tough
It's all about awareness, there isn't enough
My aim is to educate to make people aware
My Usher Syndrome challenges I'm going to share
If you are interested and would like me to inspire
Invite me to talk, go on I dare you to enquire
Over a year ago Dan, my son phoned to say he was going out with Molly, he then explained that she has Usher Syndrome. I had never heard of Usher Syndrome so decided to look it up and learn what it was. Looking back to that moment the information the sites give you do not even come close to you knowing what life is like for someone with this condition. Then Dan told us that Molly had a guide dog we thought wow this young lady is having to take on so much at such a young age (of course we all love uni,completely crazy though, but works so hard to look after Molly)
When we met Molly the first thing that strikes you is the beautiful smile she has and she seemed so full of life and the confidence shines through. Finding out later how much Molly has and is going through it is a tribute to the fight she has in her to make everyone aware of Usher Syndrome and to the determination of her family to support her through the journey she has chosen.
She has helped us learn so much about Ushers and Molly I will not leave you in the middle of the road after saying " can I help you?" lesson learnt as Molly took my arm!!
Molly is going to be an inspirational teacher and will inspire many children that no matter what life has chosen for you, you can achieve anything. When she gave her book to Gaby( Daniels sister who is eight) the delight on her face was amazing and the book takes pride of place on her bookcase.The way Molly puts her whole being into everything she does is absolutely awe inspiring.
Normal life is also important to Molly, to have a boyfriend and have the same as every other 20 year old. It is lovely to see her just being herself and leaving my hallway full of Molly shoes and of course a bag or two! She is part of our family now and we love her to bits.
Love Jo ( Dan's mum)