OUR HOLIDAYS AND THE GUILT

Good day to you all. Well, last night we started to watch the film War horse. Oh my word. I didn’t even get half way; I had to leave the room. I can’t stand films with animals as every time there is an animal in a movie, it gets hurt or killed. I left the boys to watch it and after half an hour, teen shouted on me to tell me to come back to watch it. I did, under sufferance. It was too much. It was turned off. I felt bad as they were enjoying it, I said I really didn’t mind letting them watch it, but that didn’t go down well. Why I have to be there, I’m not sure, but Hub can’t enjoy anything without me there either, I’m the same without him. I remember when he used to travel abroad with his last job; I could go two weeks without watching the TV.

My friend had told me it wasn’t the ending I was expecting, so we could have watched it I guess? Or maybe not.

 

I will forever remember going with friends to another friend’s ranch in America watching our boy horse riding. Oh I loved that day. The sun was shining, the surroundings was like nothing I had experienced before. There were apple trees around us and we were in good company. Just heavenly.

 

I’m so glad I have been able to take my Son to America to stay with wonderful people and give him chances in life he wouldn’t have had if not for Hubs determination and our friends.

 

My boy did so many things like clay pigeon shooting with an expert and steered a boat, mind you, my Husband on that day was rather green and my friend Yam I thought was going to jump overboard, but I had faith in him as did Did our other friend, and he did a great job. Mind you, I never expected such a luxurious boat. Wow, it was a day of dreams.

 

I am sure the happiest time of my life was in America on the two visits we went to stay without friends. If only they knew what an impact they had on our lives? On mine for sure. It was freedom like I had never expected before. Without worries and at peace and most of all, far from troubles.

 

We did not do the busy America, it was relaxing and the most we got involved with lots of sounds was when we went to Dolly wood, but those sounds I loved.

 

Our first holiday since Hub and I got together was the Caribbean. Well, that I have written about before. I was at first terrified. I had gone from a sighted Husband to a blind one and I really didn’t know how on earth we would manage? Hub booked the holiday after talking to me about going. I really was apprehensive. But like most things, he took charge and next thing we were off.

 

Our son was eleven at the time. Bless him, I bet he was pretty scared too, I mean, it was a big thing for him too to be faced with not one but two blind parents.

 

But we managed. We stayed in a lovely hotel. Enjoyed the music at night time, by the sea and whilst the ocean lapped and the candles were all lit, the peaceful holiday began.

 

Teen did get a bit cross as you wouldn’t believe the amount of people locals who thought he was adopted so he could look after us? Hehehe. I just laughed but he didn’t. I wanted to tell them, well, I bought his clothes to come on holiday, and washed and ironed the rest. I got his passport for him and we kept the tickets and information with us and told teen where we needed to be. We did everything we could to make it easy for him. We got assistance at the airports and only did one journey and that was interesting.

 

Teen loved the water sports and Hub spoiled him by paying for him to have loads of fun. Hub is a dare devil too and both of them did some pretty scary sports. I tried one, oh never again.

 

We went on a speed boat too, that was great and the man who owned the boat was wonderful with Teen. Took him scoober diving

He was so kind didn’t have to do that.

 

He took us to a private island too. Wow, that was wonderful.

 

So we made friends with the guys who owned the water sports and one of them agreed to take us to an event where Hub and teen could feed and swim with the stingray. Oh gosh…

That really was the beginning of me letting go of teen’s hand.

 

I boring me stayed on the boat whilst Hub, teen and every other person on the boat got off to feed these beasts.

 

Teen loved that and thankfully got back to me safe. Hub had a whopping red mark on his neck as though a love bite haha. One of them missed the food in his hand and decided it wanted English food instead.

 

We got off the boat, and teen guided us to the car park where we met with the driver who brought us there and we went to see parrots. Then stopped to eat coconuts and back to the hotel.

 

The rest of the time we just spent on the beach or pool.

Then there was Italy. Again a totally different holiday. Again lucky enough to stay in a lovely hotel. Eat the best food as Italian food I love. And the locals were really great. And this year Norway. A cruise. Again picked so teen would have little to do as far as guiding us. We got teen two massages, he loved those, as did the girl who gave him them. We did tease him about her.

 

As for next year? Not sure if we will go as now Hub has his new job, holidays off work I mean, are less as, is our money.

 

But out of all the holidays I have had since Hub and I got together, America by far was the best. But why? The people we were with for sure.

 

The house we stayed in, and the holiday cabin we lived in all seven of us for a week.

 

The weather though we did experience a tornado. Again teen thought that was exciting and he and Hub were like big kids but thankfully, we were OK.

 

Hub also took Teen to Japan, teen loved that place so much I am sure the best as he still talks about it. Hub gave him a great time. I stayed and looked after the girls/dogs. All three at the time. That was a working holiday though. Hub was on business. Teen was amazing. Hub said he couldn’t believe how brilliant he was, teen took it as a work experience. He even gave a speech to one hundred delegates. Hub was proud as he said teen was calm and not fazed by all of hubs colleagues.

 

Teen went to the factories where Hub had to visit through work and endured all of the boring meetings but one day, Hub and one of his colleagues arranged teen to have a full day touring with a kind lady. Teen saw all of the beautiful gardens and historical buildings.

 

Teen loved the technology and dreams to go back there, but even though next visit will be perhaps with his wife, I doubt it will be half as good as I don’t think you can ever beat perfection.

 

So I do feel bad that on rainy days I can’t take my Son where he needs to be and the knowledge that so many times when it’s raining, he goes to see someone it takes an hour by bus and walking, there and back, I feel bad I can’t take him in the car. Guilty but then I remember the wonderful times I have been able to give him.

 

Also it makes him a stronger person. There is nothing that fazes him. He is a strong individual who can do anything. Of course, he is still only seventeen and at times that shows, but because of our lack of sight, he is very independent. Something I have never really been so I welcome that for him.

 

He gets at me because when he was young, I wouldn’t let him play out on his own until he was about six. He had to play in the back garden with his friends, and then the friends would leave and go off to play down the road, the park or any other place rather than a back garden. Teen would have to stay at home. I feel so sad for him for that having to happen, but hopefully one day he will know why?

 

I couldn’t go looking for him for tea or when it started to get dark nor could I look out of the window to see if he was alright. It was before mobile phones too. Well, put it this way, before I believed in children having a mobile. I didn’t have one either.

 

He would bring birthday invitations home and he could only go if the ex was at home and that was rare as he was a work and play a holic.

 

But I gave him the very best birthday parties. Not just thrown money but put a lot of work into them. I did it on my own too. So we as blind parents do miss out on a lot and feel really bad that some of us can’t take our kids where they always need to be, some of us can’t pick up our grandchildren and take them out for the day on our own either, but what we do have is love. Time and commitment. What we can do, we do to our best ability. We are riddled with guilt, for example when my Son was little, we would go to school and he told me where the steps were, he worried when at school from the age of three how I was getting home. But I had to face facts, for his sake, and get white cane training. Something I really felt negative about. Something only those who are brought up to dread blindness can experience.

 

Hub from a child was trained with the white cane and he got his first guide dog when he started University. He went to Leeds University and theuniversity is huge. He still says, he doesn’t know how he did it. But the white cane to him is part of his body, for me, it was a foreign object. An alien.

Just picking the phone up to ask for that help was horrible and a day I really wouldn’t want to go through again. But the freedom I felt to be able to get to my Son without the stress I once had was worth it. Once you make the first step, the first call and get over the shame that is what I felt, I hated the neighbours watching me with my cane. But better than watching me look drunk. Better than feeling sick the night before wondering how on earth I was going to manage. What if I got lost on my way to pick my Son up? What if he left school on his own thinking I had forgot him?

A white cane is difficult, but with one you don’t miss a step. You do have to feel everything though, whereas when you have a guide dog, there is so much you pass and miss. But that can be a good thing, you get there quicker and a dog will take you to a door. A stick won’t. Also if you get lost a dog will find something for you, like the door to a shop where you can ask for help. A cane won’t. But a dog will or can walk you onto a road, a cane won’t.

A dog needs lots of care too. A stick you can fold up and put in a cupboard. A guide dog should be worked at least three times per week and sadly I sometimes only get mine out once. Sometimes three even four, but that is very rare. But they are clever dogs and need the stimulation.

 

They need grooming and feeding. Of course also they need to go to the toilet, so are you prepared to pick up the doggy doodle? It’s funny when I do that at nights. In the pitch black. The first time I did it, I had a huge smile on my face. I can tell you, something I don’t have on regular bases when picking up doggy doodle…

I used to dread the dusk when I had sight. Now whatever…

I laugh when I read about people with my eye condition who freak out in the dark. Gosh, that was me at one point. I am free of that now. No, I can’t see my boys face, I couldn’t see his paintings when he was a child at school I went through hell with his teachers who suffered from ignorance. I hate hearing him crying because I wouldn’t let him out to play with his friends. It broke my heart and I will feel forever guilt, but because I have lost my sight now, one I will be more grateful if there is ever a treatment that will bring back some sight and two I can do as much now I am blind than I could when I had sight.

 

Remember, I was brought up to see. Blindness was not in our family and it never would be. My parents slaved to take me around the world, as if a child has an illness an incurable illness, you will try your best, right? They did, but by doing this, they also hid me from reality. Not their fault. Because of them, I saw my baby for a year. Because of treatment I received in Russia. But that treatment was excruciatingly painful. I had the media on my case 24/7.

I was quoted in the press of saying whatever when I hadn’t even spoken to them. Photographs were printed of me and an ex-boyfriend when I was first married. Making out that  I was having an affair. Found out later that the photographs were stolen by a reporter working for the People newspaper. Stolen from a drawer at my house whilst I posed for pictures in our garden. I left that life and up until my Son was one, was harassed by the press and TV for stories, but they could only end up getting bored with me rejecting them, and thankfully they did.

 

I’m old news now, but good news, as those who have Retinitis pigmentosa, who were like me at one point, terrified of blindness. Living their sighted years in fear, I promise you I was you. I read tiny print on the Sunday evening and woke up blind on the Monday in both eyes. I couldn’t breathe. I couldn’t live but wouldn’t leave my Son as a one year old baby without his Mother. I sat crying every day. Shaking as what was the point of living? That was no life. Yes there are people who work and get about. They weren’t me. I was not at all independent. I had no training for this new world. I couldn’t even tell the time.

 

What was the point of watching the TV?

My baby’s smiles were blank. He used to take my fingers to show me his paintings from school. Bless him. He thought my fingers could see.

 

But stress had a lot to do with my blindness all of sudden occurring. My Dad was dying and as I have said before, less than six months later, my Mum died. So no chance of it ever coming back by that point.

It took me years to fix myself. After sorting out things that would help me to tell the time, I had to teach myself how to cook without sight. I had to learn how to feed my baby with his bottles without being able to measure the powder. How to work a washing machine and sort out what clothes to put on my boy each day. I had to learn to be a different person.

 

It was a sad world I was in.  A lonely world. No family that understood and I didn’t want to be the miserable person to complain.

 

My ex wasn’t very helpful. A fantastic Son in law, for my parents. But husband and Father? No.

 

I was a prisoner, until I woke up enough to realise, this can’t go on.

 

It was then I began my studies at college. Six long years, but I did it and I met friends. I was still broken and weak, but got out of the hole. Every now and then I was kicked back down, but one Christmas came. I decided enough was enough for me and my Son. I wasn’t going to show my Son the violence I had to live with from the age of seventeen. I decided to leave my Husband.

 

Not at all easy, as he had the money. He had the power and the sight. I had been with him for over twenty years and of course there was a part of me that had to love him, and I knew he, my ex had no one but me. His family didn’t care, but he didn’t care about me and his Son, so something had to be done.

Not easy because I had my boy. Where would we go? But that year, my Son broke his heart. He saw his father in a way I never wanted him to know. He was growing up and it was time to move on.

 

Long and short of it, I was reunited with my first love. My boyfriend from school. Hub and I have known each other since we were six. 28 years apart, back together. He walked into my life and turned on all the lights for me. He has educated me and shown me that blindness is horrible, yes, difficult and very depressing, but also we still live on. It is possible. It’s stressful and some things are impossible, but we just avoid those and look for the things we can do.

 

Like going out in the dark and it making no difference and going abroad, yes with our Son, we haven’t dared yet done it on our own, we may one day, who knows.

I still dream to see, but I don’t live in fear of the darkness anymore and I look at all what I have been able to do for my Son. He I’m sure won’t appreciate it, I guess why should he? What kid does appreciate their Mother? I know I didn’t until it was too late.

 

I spent my life fearing blindness. Now I’m blind I am free of that.

 

Yes when I go in the back garden, I wonder if someone has let themselves in our house. But I come in, learn to use my other senses like hearing and just a feeling, and know that nobody is in my house. Smile and carry on my day.

 

I’m writing this because of what a lovely lady wrote in a group I’m in today about feeling guilty and down. She isn’t alone. We all do. But look at what we have done and can do?

What can we offer our future Grand children or existing ones? Love fun and genuine feelings of caring.

 

We have a gift. That gift is real life. Tough life. But we can come out of the other end. I promise.