A MUST READ PLEASE?

Good day to you all my Bloggets. Well, today my heating doesn’t work… I have installed HIVE. I told you about it some months ago. Though most of the time it’s amazing as I can be hundreds of miles away and set my heating via my mobile phone, by a simple text, the internet has to be working, my internet has been jumping in and out of service all morning so now no heating and very precarious internet. So who knows when this will be published? Oh my house is so noisy today. My dogs are going mental. They are running around playing with their nails tapping on the wooden floors. It’s like being under an umbrella in the pouring rain.

Tip tap a trillion times.

 

My oven alarm keeps going off. I have pressed the right buttons so many times, but obviously they are not the right buttons, haha. It is quiet for a few minutes and starts again, really, it’s as though I have someone attached to a heart machine in my kitchen.

My Canary, he’s Irish you know? Is singing so loudly today, oh I adore him, what has he to live for and yet he is so very happy. I have never heard such a loud canary.

 

Oh now LC is growling at little Wagga. My head is spinning.

Teen went out last night in his friend’s car. All the lads now have cars and for now, they are toys. Wait till they realise how much petrol costs? They went for miles, as teen left his wallet in a pub the other day when he was with someone… Thankfully his kind friend took  him back to the same place to collect it, if not  for his friend, I don’t know when he would get it back as the person who he was with wouldn’t, as she is away again for half term.

So he had a great night, in the end there were three of the kids he is friends with all in their cars. Oh it’s scary how many of the children are driving? Of course I got wrong for telling teen not to get in the car if his friends who were driving were drinking, he told me to stop being negative and he or his friends wouldn’t be so irresponsible…

Well, five hours later, he got home safe thank God.

 

Today he emptied the dish washer for me and re filled it, even offered to make me lunch. Now he is at the gym. His friends are all at work this afternoon, but no doubt he will be out late tonight with them. They are a lovely group of lads from what I have heard from not only teen but other people around here.

Oh this week has been an odd one. On Monday I had a meltdown. I just couldn’t bring myself to do the same old housework again. I couldn’t face it. It’s the same thing every day of my life. I need a break from reality.

I would love to do something new, but what to do? I will never forget the day I was with friends in America, oh it was amazing, my friend took me to the activity centre. Where there was swimming pool and various games. We went into an art room and I painted. Oh it was freedom like I have never felt. The best thing, the ladies who were there I doubt had ever been asked to give materials for a blind person before but they didn’t make a fuss about it, I still have that mirror and will treasure it for life, and one day who knows, I may be able to see through it?

Today I read a post from a group I am in about a lady who has just found out her Son who is eight has my eye condition. She is devastated. She is in agony. She is grieving. Oh bless her. I feel so very sad for her. My Mum was in the same situation when I was four. If only I could go back to those days to tell my Mum however she worried, it would make no difference and if only she would put her efforts into looking at what I could do and not focus on what I couldn’t do, my life would be easier, but I will never blame my Mum for anything she did. She did what she thought was best and that was to take me around the world and fight for my sight. Bless her because of her, I saw my babies face, OK, only for a year, and because I didn’t live in the blind world, I couldn’t didn’t really cope when I lost my sight, if I was prepared, life would be so much better, I would have gone to University and been someone now, like my Husband is.

 But how would I cope with the news my Son was going to be blind one day? Oh I can’t even begin to tell you how painful that would be, though I would be different to my Mum, but life is different now. Blindness back then had no future and there wasn’t the technology around then. For example I wouldn’t be able to write to you all now if not for technology. I have the very deer software in my computer that talks, each word I write and as I have said before, thankfully, one and only one thing my school taught me, was to touch type. I am so grateful for that ability, as without it, I would not be able to write my blogs, my poetry or speeches I write for people, my short stories or even just to shop on line for gifts and groceries.

Oh and of course you have heard about my mystery clothes shopping?

 

Because of technology now, Hub and I can watch the TV and know what is on the screen as we have great audio description in the UK. We can set to record programs, well hub can, me? I’m rubbish, well; you know how men say that we are so much better at things around the house than they are just to get out of it? Haha, I’m like that with technology as far as the TV goes. When I see my Hub checking what’s on the TV, or setting a program to be recorded, I’m in ore.

But he does it and he can’t see. Tech can allow us to text friends on our mobile phones and kind of tell what colour clothes we are wearing. Of course nothing will replace sight. Nothing at all and this day for me to see, I still need, I just don’t live for that anymore, but I think partly because I have hope now that it’s not the long dark road we used to have to travel down.

As for my melt down Monday? Oh when Hub came home, there was no work done in the house, there was no tea ready for him, I felt so guilty. But he was so adorable. He hugged me and said the most important thing was that I was there for him to hold and for him nothing else mattered. You know I just needed that as after then, I got energy to carry on another day.

For this poor lady, I wish I lived closer to her, as I hear her pain through her words. I want to tell her and other Mums out there and Dads of course, your child may have Retinitis pigmentosa or any other eye condition that may lead to blindness, but May is the operative word. As may not either end up blind. There is so much research out there so much money being spent, sadly not enough as if so we would have a cure or treatment quicker. You know there is a race on in the world who can find the treatment first? Well, why don’t people put us before competition? Get all together with all of their knowledge and how quick would we have a treatment?

To this lovely lady, no one can tell you what to do, but from a person who blindness was thought of as a curse, and by the way, I agree it is, though I’m sure millions of blind people will disagree, and that is up to them, all I can say is if my parents told me I had RP and could end up blind, it’s not the end of the world, I would have been taught Braille, I would have been able to read to my Son rather than feeling so guilty I couldn’t read to him in print, and didn’t know Braille. I would be able now to read medication as in England we have Braille on all medication. I would be able to read our bills as they all come in Braille and I would not have waited until this old dog can’t get the spark or energy to go out into the big bad world on her own without feeling a total wreck. I would not be a failure like I feel now. I know since my days of feeling like death because of my sight loss, I have gone to college, I have taken so many exams to prove to myself I can. Every exam I took I ended up with an A, an A* or a distinction in whatever I did. It came so late though, those qualifications should have come when I was young and lead onto University and then a job.

People would say it’s never too late, I feel it is for some things. I hope one day to have my writing in paperbacks on shelves and audio books as well as Braille. Then my life would have been worthwhile. In the meanwhile I can only wait to see my destiny. I have loved the fact this week I have received three messages of kindness saying the blogs keep those people going, I really am grateful for that, as at least I feel like I am doing some good.

Going back to that lady/Mother. I would tell your Son he has an eye condition. I wouldn’t say he is going blind or to be blind one day, as he may never end up blind and one step at time. Then see what teacher he may need at school. Teach him or get him taught Braille, again, he may never need it, but if the inevitable occurs, then he will be ready, get him trained with the white cane, he may not need it now, but if he is taught it now, it won’t be like it was for me as an adult, or in some peoples circumstances, awkward teen years uncomfortable and cringe worthy. It will become normal for him to pick up his white cane and go out to the park to see his friends, really, kids will be horrid to him, but he will never make friends if he is protected in a safe environment. Little Jack, will say Tom, come out and play, but only if Tom is seen out and about, otherwise Tom will be the boy who is blind, not Tom who’s a right laugh and Tom who can ice skate better than any of his friends. I had a friend at school, he was blind and you should have seen him ice skating? He had no fear. My Hub used to ride his bike up the lanes. Yes he did have a couple of crashes, but he soon learned that you have to listen for parked cars and that is a skill as an adult, he has never lost and is so helpful now when we are out and about.

Yes blindness is dreadful, I hate it, and I can’t bare it some days. It has me as low as can be. So low I am crawling on the ground, but that is mainly because I am in the house, I’m not out at work like my Husband. I am hearing my own echoes and have no conversation with intelligent adults. If I had the knowledge of the blind world when I was young, I would be so much happier now. I can tell you though, that I have a lovely house, we have done so much to our house to make it lovely. We did it all on our own. New bathroom, including picking the tiles and all the accessories for it, new carpets again picking them ourselves all decorated, we chose the colours  as we did our furniture and conservatory size and shape. The tiles on the floor and the wooden floor in our lounge. Our blinds at the windows are also designed by us with no help from family or friends. Yes it’s probably took years off our lives with stress, but we did it and if you are the kind parent, you will be there for your child when he or she needs you, as long as you give them the ability to know that they have the knowledge to face life’s challenges on their own as you won’t be around forever as I learned when my parents died when I was thirty.

Few, gosh, this is my blog for today, when I started to write; I had only the weather in my mind. Since then, I could not type fingers so cold so I got a pen, pushed into the never ever regions of my heating box and bingo, my heating is now on. See anything is possible to get by and until I can see the beautiful flowers and smiles on my loved ones faces, I won’t ever be happy, but I have a dream for a Husband and a stunning Son, who gives me hell, but I adore him and he is a great person to so many people. I have some wonderful friends too and most important, I like you and your children, have a future as long as we keep getting the funding to fight blindness, and find treatments, we will make this difficult world together. Oh and I must add, I have a blind friend, who plays tennis. Yep, tennis, he also goes to do archery.

Could a greater miracle take place, than for us to look through each other’s eyes?