Good day Bloggets. It’s wild out there, just got in and I am
pleased to say we were on our way back when the real winds started. I hate the
wind, as I always say it’s a blind person’s fog.
Well, I have to go into the gym today and move. A prospect I
can’t say I am thrilled about. I always say, losing weight is something that is
also in the mind. Feeling good about exercise and doing it, with joy, and enthusiasm
gets the weight off, but if you do it because you feel it has to be done and
your mindset just isn’t connected, nothing will happen.
Just saying!
Nothing is happening with me for sure.
Just before midnight last night my Son text to tell me he
was about to go out to the nightclub where there is a show on. I pray he got
back OK. They lay transport on for them. Imagine if you miss that and then how
do you get back to your hotel? It’s not a place you can thumb a taxi. Or, a
place I would want him to thumb a taxi. But
so far, he is still loving his holidays. Ages before I see him though. I miss
him so much. I think work will be too as he is a hard worker and does loads of
hours.
June has just taken our dogs out for their free run. They get
so excited. I just hope June will be okay today as it’s really windy. I do
worry, she’s in her seventies.
Hub has a sore throat today again, but he isn’t as ill as I was.
Thankfully. It’s his second burst of cold in just over a month, but his office
is very small and there are loads of people in it as well as the amount of
times he is in a taxi during the week even a train carriage. He’s never in a
fresh open space. I dream of living where there is fresh air, but if we did, we
wouldn’t be near all the things that we are next to living in a town. But, hub
was on his way from work the other day, he got off the train which if there
were no cars, it would take twelve minutes to do that journey. It’s only 25
minutes to walk, but not at all blind friendly, so he got a taxi. 56 minutes
after he got in the car, he got home. He said the traffic was just the worst. After
coming through the door saying. “Right that’s it weare moving!””
Again? Nope. Not again. But I see his point. Our next house
will be our last one. If we could see, we could live anywhere but when you can’t
and you don’t have help, you need to be practical. Living here isn’t a bad
place for those who can’t see. Apart from the road from hell that sadly takes
us to everywhere nice to go like entertaining places, but at least at this side
of the RFH, we can get to basic places. When we move, we will have to be near a
Doctors, Dentist, Chemist/pharmacy vet and grocery shop. But if we could see,
wow, we could live anywhere we wanted. Just to jump in the car and get where we
needed to be would be brilliant. It’s a dream for us, one we need or I need to
stop dreaming about and live with what we have. I still haven’t excepted
blindness you know. I have learned to live with it, cope in a way, but not
except it. And I need to. I wake each day in the dark and that sinking feeling
still happens only now it’s not as long and it doesn’t turn into me wanting to go
back to sleep and stay asleep.
What I do, do, is get out of bed, and sigh, saying to myself.
Please hurry a cure or treatment? Then continue with my day doing what I am
expected to do and what I know I have to do. It’s an existence. And sometimes a
life. if I could see, it would be a life, but I can’t see and there isn’t
anything in the very near future that is going to make me see so I just need to
get on with it. Move forward and stop standing still.
Yesterday’s blog (RP Files) received almost four hundred
views all because people with RP or those with it in their family, all need to know
what our future holds. The news I wrote about yesterday basically was fantastic
for our children, well in my case my Grandchildren. You can now in America so I
hope other countries too, can get IVF to remove the RP Gene and it’s not as I learned
only for those with X linked RP. But other kinds of RP. Some say genetically modified
babies isn’t good, neither is telling your child they are going to go blind.
Believe me, that isn’t what we wanted to hear. Not when your child then learns
that from now, there is something that you, could have done about it. So, it a
year you give birth. In fifteen years when your child with RP says he or she
can’t go out because they can’t see in the dark. When their friends are all
going to a party. When your child is struggling taking important exams but they
can’t see the blackboard or papers properly. OK so, in the UK we have a lot for
the children with poor sight, but there are countries that don’t and there are
many children in the UK who still suffer big time at school.
Your children’s friends will take their driving lessons resolving
in a licence to drive, going for their first car and your child won’t be able
to, because you didn’t do your part before they were born. We can’t help having
RP we can help passing it on by not having children, but some of the best Mums I
know have RP and some wonderful children have RP, but in those days, we didn’t
have a choice of wiping out the gene. We did have a choice how many children to
have though, some people with RP have more than a couple of children, that, I don’t
understand, I personally wouldn’t play with luck like that, and of course you
can have one child and that one child could have the disease. But if you have
one that can see, personally, I wouldn’t feel too good about having a second,
though would consider it, but if I had one child that had RP, no way I would go
for another, just my personal opinion, not everyone’s, but if their option is
out there now to eliminate the gene that causes RP, then why not?
My Husband doesn’t feel good at all about the so-called
designer baby. And neither do I feel good about designing a baby purely for looks,
height or mental ability. As in, colour of eyes, hair, over a certain height or
making your baby a child prodigy. I only agree with genetic intervention when
there is a disability or to eliminate cancer for example.
If you now have a choice to remove the RP gene and you chose
not to, what will you say to your child in the future? I mean, my Husbands
point of view is we don’t know what we are messing with. We don’t know if our
kids won’t get cancer in the long term because of this but fact is, if we
thought like that, all science would stand still and there would be no
progression in any kind of medicine!
Now please, scientists, find something to turn on my lights?
Talking of lights, and I was, honest, kind of. During the
night there was an almighty bang and the Little Fella barked the house down. I think
it was someone’s big bin falling over. But LF was going mad. It sounded like a
bomb if not for a bin as my brain said bin because it was the closest thing I could
think about at four something in the morning. Not sure what it was, no one was
trying to break in though, but I did turn on the light I, say to scare the burglar
away, Hub says I light the way for him, no, I’m telling him, I’m coming, that
is why I have put the light on. You have been heard, that is why I have turned
on the light. And I’m very scary. Honest I am.
My thoughts today are with Spain and Catalan. Such beauty an
yet such anger. I hope this will resolve in a peaceful and fair way.
Until later, love, peace and live life to your full ability
and peak around the corner to see what else you may be able to do. X
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