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Monday, 4 January 2016

JUST BEFORE BED PEOPLE POWER


Just before bed, time to reflect. As last Christmas is a memory now and we start another year. What will this year hold for us all? The fact is, none of us know. Even if we have plans, anything could happen to change them! Our brass could turn into silver and silver to gold. If we dream our desires they could turn into reality.

 

Wishes, dreams, all of your aspirations for the next twelve months some old and some neoteric. For me, for eighteen years almost nineteen I have only wanted the best for my Son. He and I had a tough start the two of us were inseparable and I pushed for him what I never had but gave him what I craved for in the cold days of boarding school as a child and that was love and acceptance. So for him I wish only for him to laugh in a natural way and feel peace in his heart to have no illnesses. To be safe and healthy and our girls too. They came into my life seven years ago and will be in my heart forever now. It is my duty to be a carer for life. So for our kids to be OK for them never to feel pain I hope I have been through enough of that for all of them.

 

I hope again, another old wish, for my Husband to be well and remain in the lovely family of a workplace he is attending right now. The travel is awful for him two hours plus per day and we did think about moving, but I love it here we have never had such great neighbours. You know when you can’t see, it’s a terrifying world to be in when you don’t have family near you, and just to know that at the end of a phone call, someone will rescue you even though Hub and I have to be totally desperate to ask for help, just the knowledge that help is at hand is that blanket of comfort.

 

I would love to be able to get out more this year. It is my dream to walk in the countryside. On the beach. To feel so very free, not just to go out to the shops Doctors, dentist and to visit friends, though visiting friends is to me so special, I’m always amazed when I’m sitting with a cup of tea or glass of wine when all of us can’t see, we have our get together all friends from school all in the same boat. I sit there with a smile, how on, earth did we get here? Trains taxi walking all of us without sight and all under the same roof. We did it with our guide dogs and the help of assistance at the train stations. But the beach? Country pathways? Without sight impossible for us. So to be able to do that and appreciate the scenery, a cure or at least treatment for Retinitis Pigmentosa and other degenerative eye conditions would be much appreciated.

 

In reality I know that this year will not bring a cure, perhaps never in my lifetime will I see like a sighted person, but in my life time, I may see again my Sons face. Last time I saw him was when he was one. To see your baby one day and after a sleep, wake up and look at nothing when he is crying, playing, reaching for me and so on was cruelty beyond belief. To see my child as a man now, wow. Will I even recognise him? Of course as he will talk, but to look at the face of a man when before was a child? Can my mind take such a shock? I tell you I’m ready and waiting. Now, the shock of seeing myself after looking at a 29 year old and now? Gosh, I will have changed. As for my Husband, he was twelve when I last saw his face. Now 47. He has never ever seen me as he was born blind. If there is ever treatment for him, though he doesn’t have an eye condition that has a name sadly, no one knows why or how he is blind.  What will he make of my face? He won’t understand beauty or plain or ugly. We learn those feelings. He won’t know what a flower is; he will have to be taught. Its mind blowing, I will know all of those things as I had some sight. But my memory is failing.

 

So a cure or treatment won’t be this year but we may hear of a breakthrough in science in genetics in stem cell. A breakthrough that will mean within the next ten years and I say ten years as that is the number all medics like to say and I won’t make a joke that they to count further will have to take off their socks, but ten is the in number. Ten is better than a life time and that is what used to be said. “Never in a lifetime will you see!”  Those words killed me. Now they are saying for sure we will. But question, when?

 

In my blog at the end of the year, will I be reflecting on the day when I blog about a fantastic future for those with blindness in their lives? I say there for more reasons than what you may think.  Full families are affected by the loss of sight. Not just the individuals.

 

 I’m not that person anymore who constantly looks up for cures every single day but I am always listening to new reports just now I don’t get excited unless they are concrete promises. I have learned thanks to my Husband and other friends without sight, to live to the best ability. And it’s tough, it’s depressing, difficult beyond compare, but we live. We laugh too. But one day, I hope to be free of the darkness.

 

Just before bed I believe in hope and a power we have not yet understood. But I believe in people power and the mind can talk to our maker I’m sure of that and if  we all ask for help tonight just before bed, then we may be blessed. Even if it is words of hope. Hope is all we need.

 

Just before bed, please think how lucky you are if you can open your eyes and see your hand in front of your face. If you can read your letters in the morning. If you can drive your child to school and not feel that guilt as they head off in the ice snow and rain on their own whilst other parents drive their kids to school. I hated those days and this is what I mean when I say families are affected.

 

So just before bed. Thank your lucky stars if you have accepted blindness as there are so many of us out there who are hurting right now. Who can’t breathe who is shivering with fear? Every corner of their homes they are jumping as they see someone standing there. Then they will learn it’s their brain still seeing. For those who are newly blinded I know how you feel. I was there and still now go to that place of total fear and agony. But I also have joy in my life from time to time and I have the love of my life by my side now we are two peas in a pod. I have a lovely house and great friends. Only a handful but I believe in quality over quantity.

 

Just before bed, tomorrow is another day and you drive yourself as no one else will drive you to a place you want to be.

 

Goodnight Bloggets. X

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