Good afternoon Bloggets. The afternoon is chasing me and the
early evening is waiting. I have just got in. I have been miles away from home
today. Left Hub working from home. I’m shattered. Loads of brain work today and
on my return, a pie I left from last nights dinner was waiting for me along
with a knock on the door from my neighbour who brought loads of delicious homemade
cakes… one I tried with a much needed cup of tea had the most magnificent thick
chocolate on a hard biscuit base with huge nuts and she brought coffee cream to
go on it but I didn’t have that. There are loads of cream cakes in the fridge I
shall leave those to the boys for after dinner tonight. I put on 5lbs, just
putting them in the fridge!
I am so far behind with my writing work. And must get back
into that this week though tomorrow I have aftercare with my lovely guide dog
instructor. Oh, no, I love the lady as I have written about before, she is my
favourite instructor I have ever had, but still it’s like taking your driving
test all over again.
Every year we are tested on how our dog is doing and how the
partnership is going between me for example and my Waggatail. Well she has
worked great for three days in a row, let’s see tomorrow? Haha. Moreover, see
how I do.
We will go for a walk and my instructor says nothing much
unless there is something to correct or advice to be given. She will walk
behind me just observing… oh. That is not good. Every move is watched. I will
have to use the correct hand motions and steps for example when I cross a road.
There is a way to stand and a way to walk. At least when I used to do the odd
cat walk jobs, I knew I was good and had it going on… Smile. Now, I know I’m
rubbish and I certainly don’t have it going on any longer. Long have gone those
days.
It’s really funny as the dogs just seem to know they are
being watched and they even feel different in harness. But still my lady will walk in the house, and
my Wagga will show herself and me up by going absolutely mad/crazy/wild at the
sight of my GDI. Of course, my GDI will ignore my Waggs until she calms down,
then she will show Waggs some love. But not whilst she is doing her impression
of a dog from the cat and dog shelter! My Waggatail that is, not my GDI.
Lots of editing this week for people’s stories. One friend
and two people who were strangers until they asked me to take a look at what
they have written. My friends book, I took a professional read, looking at the genre
thinking no way I am going to get into this story, it was so far away from what
I normally like to read, but I can tell you by the end of what I had read, I
loved it all. Just shows that my friend is a natural to get someone who
wouldn’t normally pick up such a book to enjoy it and want more of it.
I have written a lot for on line magazines etc and today I
have been asked to write a speech for a wedding. But I have not committed to
that until I get some of my own writing done.
When I left the house, my Husband was on the phone and on my
return over three hours later, he was still on the phone. And guess what? He’s
back on the phone. He started working at quarter past eight this morning and is
on the phones until half six.
I can’t believe how cold it is today. The other day we had
the hottest April day on record and today I have my thick jumper on again.
I was reading about what vitamins to take that would benefit
those with the same eye disease as I have. Well not for me as it would be a bit
late… there is no vision left to preserve.
Most people are told to take high doses of vitamin A. but only under a
hospital/Doctor’s supervision. As too much can be very bad for your kidneys. So,
an annual blood test has to be done.
I remember years ago in Russia when I was only 6, I was
given vitamin A in injection form. So painful with the blunt needles they
administrated into me. They used to boil the needles in a huge metal looking
box. The sound of that when I used to enter the floor where I was to get part
of my eye treatment. Oh, I felt so sick. Still to this day, I shiver when I hear
the word, needle.
The pain I went through was the worst feeling. And the way
they gave me my needles. Normally chasing me down a long dirty corridor to
catch me before forcing me to be injected. Normally held tightly by a big burly
ex-soldier. I remember him well and so many years later he came to talk with me
and my Mum. Announcing that he was the man her daughter bit…. Oh, my Mum looked
at me horrified. Well, I didn’t deny it, what was the point?
I was separated from my Mum for seven weeks. Given the worst
painful treatment ever. No one spoke a word of English to me. I was totally
traumatised. There was no explanation to what was going to happen or what was
happening. I didn’t know where my Mum was and I can tell you, I was so afraid
and being around some very dangerous people who had other issues going on,
other to poor vision. They shouldn’t have been allowed near children.
There were no toys to play with, no TV to watch. Just the
odd table with two men at a time playing cards and huddles of lady’s then a
girl three years older than me who had deep problems and myself. I guessed at
her age was about 9. I learned fast how to speak Russian. I certainly learned
the word for Injection. And no. no, I wasn’t going to let that happen to me
again and no they weren’t going to stop giving me them.
172 needles later, my torture ended, for a few months before
it all started again and other pains in my life began.
That was a long time ago. I had a lot of sight then as in
what I saw was clear. As long as I stood still I was fine, whenever I moved, it
was a problem.
What could the Doctors do for me then? They said stop me
from going blind. And they did for so long, then I stopped going to Russia when
I was 22 and the pains in my eyes got worse. I was seeing more floating white lights
and my vision did get slightly duller and narrower
But still I had enough sight to see until I had my baby then
hell started just as I thought it couldn’t get any worse.
People ask me how did I manage bringing up a child? Well, I
can’t tell you it was easy as of course it wasn’t. but I adapted as best as I
could as did my baby. I have told you before how he would come to the spoon as
I fed him, rather than me try to find his mouth. Same as when I gave him his
bottle. He lay in my left arm. My right hand had his bottle. Now, without a
hand to feel where things were, how to get the teat of the bottle in the baby’s
mouth, without missing?
Always my hands were clean and as I held the bottle with my
right hand, I freed my pointing finger to trace his tiny mouth. I kept my
fingers near the top of the bottle so I could with one finger trace his mouth
then pop the bottle with my left finger.
I won’t go into the pain I had measuring his bottles but for
the formula now days, it’s easier as there are jugs with tactile lines on the
inside.
Changing nappies? Oh, always on a changing mat. Easy to wipe
down and most times baby was more still on a mat than on a towel on the floor
as for a table? No, never. Too dangerous. Especially when they wriggle. Always
keep your changing items to one side near you. Don’t start to spread items
around example nappy bags, wipes, creams and so on. We end up using more wipes but,
in the end, we get our babies clean. Just don’t make it so you have to feel for
where your things are hence keeping everything together. Put everything down
before putting baby down and removing nappy.
Most of my friends who are blind pull their babies in a
pushchair behind them and use either a guide dog or white cane to get out
places. For me? I actually didn’t go out with my baby alone. His fresh air was
in my back garden which was vast and the air where I used to live was
excellent. When he got older I did take him out to play groups and I can tell
you that was hell. Not knowing where he was but at least they were organised places
so not anyone could just walk in from the street. It was there I met friends
and they kindly offered to pick me up and take me where they took their
children.
I have spoken about reading bed time stories to my child and
that was hell. The pain was too much for me. As this was my dream. Boarding
school didn’t allow me that pleasure before bed of a story. More like a cold
threat from a house mother. I promised
myself I would always be there for my child before bed and I was. But stories?
I didn’t read Braille as blindness for me happened overnight and my life told
me I would never go blind, reality spoke different words.
Obviously, I couldn’t see print so, what to do? Well then
came in his cuddly toys and my different voices and imagination. A puppet show
each night with different stories. When he was older, I turned pages asked him
what the picture was and filled in the gaps on famous fairy tales I learned
about by listening to children’s story tapes on cassette. Remember those?
My Son was just amazing. How he explained pictures and still
today, his description is wonderful. But is that a Burdon I wanted to put onto
my child? Does he think of it as a Burdon? I pray not, he never ever lets on it
is, in fact the opposite.
It was when it came to school age. Then came the big
problems. The staff and their attitude. But that is another story I have
touched on many times.
For those who have poor vision, use what you have and for
those who have been told one day they will be blind, prepare yourselves. Practice.
Something I never had the chance to do. Everything happened so fast. And I had
that dreadful treatment for so many years to hopefully keep my sight forever.
Right? Wrong. But never mind. What happened did and I did see my babies face.
But, was it better to see him for a year, or not at all as I can tell you the
agony of his beautiful eyes and smile his hair and features, being removed
overnight was too much for me to deal with at the time.
I will I hope have Grand children in a few years. I pray
every single day that by then I will have sight and be able to do with my Grand
baby what I couldn’t do with my own child. But one thing I did with my child is
worship him and bring him up to the best I could and I have made an OK job of
it all. Though in all honesty, I wouldn’t want those days years back again. If
I was told before he was born of my life would I still have him and go through
what I did? Of course, as if not I wouldn’t have my Son. And my life wouldn’t
be complete without my child as he is my future. But the hell I went through in
my opinion, was mainly brought on because I wasn’t prepared nor did I have any
support as I have told you just after losing my sight both my parents died.
My Son and I have a very strong bond. But I am beaten with
my past. I just have hope for my future. I have my Darling Husband now and
together we get through life and love each day with each other. Face problems
together and thank God for our guide dogs.
There are so many people who are blind out there on their
own. No spouse no children. No friends. Just existing. I just hope you are not
one of those people? As I can tell you, I was you at one time. It’s totally
possible to have light in your life without seeing it, but those dark days are
a killer. When you have those days, just know that light switch is not far away
just look for it and turn it on.
If by the time my Grandchildren are born, I still can’t see,
I will be so prepared. Feeding them changing their nappies and knowing what
toys work and what don’t, will all be so easy. as I have had the practice and will be
prepared now. as for bedtime stories? That will be up to their Granddad who
reads Braille perfectly. Smile. And I will love listening to him reading to
them knowing they have gone to bed with so much more than what I went with all
those years ago. I never wish for a child to go through that.
Hub and I will have so much love to give to our
Grandchildren. We have one child so probably one two max three Grandchildren
but each one will have so much in their life.
Is it important to read to your child before bed? Oh, yes. In
so many ways it’s important for your child to close their eyes and sleep in
peace without fear.
From the age of four I lived in fear. It’s not at all good.
So, if you could lose your sight, should you have a child? Of
course, as I have said many times before, I was the best parent I could be and
my friends who are blind are fantastic parents. We can still love and I am sure
have more time for our children than what we would have if we had sight. And life
isn’t what it used to be. When I had my baby, there was no tech or help like
there is now. and now days thank God you don’t need to go to boarding school if
you are blind. We are not locked up now days. We are part of society as are our
children.
1.
Do everything floor level then nothing can fall
or drop
2.
Before starting
to feed or change baby, have everything close to hand
3.
Ask your
local blind society what you can buy to make life easier
4.
Learn to
use a white cane so you are able to get out with your child
5.
Buy toys
that have some sound to them even if it’s just fabric that makes a sound, like
those elephants with different materials which make different sounds
6.
Teach your
child from a young age to put their toys back in the toy box as standing on
them isn’t good especially things like Lego!
7.
Again, your
local blind society will be able to help with toys if your child for example
has poor or no vision.
8.
Try to go
to Mother and baby/child play groups to meet others. Even if you go by taxi at
first.
9.
When walking
in your house if your child has their toys out on the floor, ski. Smile. Don’t
lift your foot up as what goes up, has to come down and down onto a small toy?
10.
Never presume
because you can’t see something, your sighted child won’t see it. So, keep
everything dangerous out of the way and windows locked with the key elsewhere.
11.
If you
are feeling depressed and frustrated with regards your eyesight, don’t let your
child see you upset. Don’t put your pain and worries onto them.
12.
You are a parent/Grandparent just like sighted
people, just some of your bits aren’t working… but if you have love in your
heart you will be the best parent out there and never give up, as one day I pray
there will be a cure for blindness and if we hadn’t have had a child because of
our fears of how we would cope, we would have missed so much in life.
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