The following letter is my tribute to her.
Letter to my deafblind daughter who is beginning to understand she is different
I cannot begin to tell you just how proud we are of you. You are such a warm, loving, funny, engaging and determined little girl. Nothing seems to faze you even though you have incredibly poor vision and hear through cochlear implants. You have always had this incredible knack of exploring the world and making the most of what life has given you. I am so grateful that you are courageous and happy.
People can’t help but warm to you. You throw yourself into life with such gusto sometimes it takes my breath away. It can also scare me a little and I know I irritate you when I tell you to be careful. I really don’t want to place any limits on you. You are only five and blissfully unaware of the barriers that lie ahead. Perhaps that is the best way to be but I know I can’t protect you forever. You are extremely bright and a really deep thinker, you will work it out.
I have begun to notice little changes that indicate you are losing some of your bravado. You no longer want to walk across the playground with your friend in the morning. It always amazed me that you didn’t mind walking alongside the other children with their unpredictable bustle and noise. Now you have changed your mind and need me to guide you. You stop talking and I can feel you tighten your grip as people whizz past. This upsets me and I have to lean down to encourage you to keep going. I will always do this no matter how big you get or how scared you feel.
You are starting to talk about how your eyes don’t work very well and I know you feel embarrassed when you can’t recognise your friends. I never, ever want you to be ashamed of your dual sensory loss. Your eyes and ears don’t work the same as your peers but this makes you the tenacious, inspiring little girl who we love so much. Thankfully we have an extended network of friends who have children with visual impairment. You really love meeting up with other children who use long canes and are learning through Braille. It reassures us all that there is a community where we belong. People who understand and can share our day to day existence, triumphs and tragedies.
You asked me today about whether you can meet other children with very poor vision and cochlear implants. Oh my darling one, you are unique. Not one of the many professionals that fill our lives has ever met a child with your eye condition who is also profoundly deaf. It is unfair and so incredibly sad for all of us. Daddy and I dread the moment when you ask us “why”?
In that first hellish year the geneticist told us that you couldn’t have been born with any worse hearing or vision. Well you carry on astonishing everyone with your progress. I want to keep filling you with confidence and pride in who you are and what you have achieved. I hope you know just how lucky we feel to have our little sunshine girl. I can’t wait to watch you grow into your life and promise I will carry on clearing the way ahead for you. My job is to keep you safe, encourage you to be independent and make sure you know just how extraordinary you are.
This comes with a great big cuddle.
Your Mummy x