I am a disability and lifestyle blogger. I am registered as severely sight impaired (blind) due to a condition called Retinopathy of Prematurity (ROP).
On my blog, I share my experiences of living with a visual impairment, tackle the common misconceptions surrounding sight loss and disability, educate others and support people living with a visual impairment or other disability.
Although my blog is predominantly focused on my experiences, I wanted to share my Mum and Dad's story on what it's like to have a daughter that has a visual impairment and what life is like for them. My visual impairment has as much of an impact on their lives as it does mine.
In this post, they tell you what it's really like having a daughter that has a visual impairment, shed some light on some of the highs and lows and share some tips for other parents.
I am always happy to answer any questions that you may have. - Holly @ lifeofablindgirl.com
My Parent’s Perspective on my Visual Impairment
Today’s post is really special to me, as you can tell by the title, it’s a guest post by my Mum and Dad. My blog is very much based around my own personal experiences, so I thought it would be nice to get my Mum and Dad’s personal views and experiences on what it’s like to have a daughter with a visual impairment.
I’m hoping that this post will help other parents out there who have a child with a visual impairment or another disability, and give you a bit of an insight into what it’s like to be a parent of a child with a visual impairment.
It’s a long post so get comfy and enjoy!
So without further ado, I’m going to hand over to my Mum and Dad.
Holly was born at St James’s Hospital, Leeds, at 24 weeks, this is rather early considering a normal pregnancy is 40 weeks. She was born just after her twin Natalie who weighed 1lbs 4oz (567 grams), but sadly she did not survive, Holly’s birth weight was 1lb 6oz (624 grams) which is less than a bag of sugar. She was tiny; we wouldn’t have believed that a baby could be held in one hand.
For the first few weeks of Holly’s life she was kept alive in an incubator.
Not to put too fine a point on it, Holly was fighting for her life. We were living off our nerves for weeks; it was honestly an emotional roller-coaster. My work loaned me a pager in case of emergencies, the days before mobile phones, yes there was a time before mobiles. The hospital only ever used it once early in the day, what a horrible sinking feeling when they tell us that Holly was not very well and they suspected that she had meningitis. We live some 30 miles away from Leeds and the hospital is in the centre, can you imagine the journey we had and the relief to be told it was not meningitis but just one of those things that premature babies do…
Part of the hospital routine health checks were eyes, where they found a problem, that Holly’s retinas were not attached properly, this is in part due to the fact that the eyes are one of the last parts to develop, being born mega early creates the problem, then as oxygen is required for survival, the retina then puts a spurt on and grows fast, too fast, and does not attach properly, this is called Retinopathy of Prematurity.
After Holly was out of danger, it was decided to operate on her eyes and she was transferred to Leeds General Infirmary, we were advised that they were the specialists in that area. Anyway, they decided for some reason they could operate on just the 1 eye, as it was described to us as like trying to stretch and stick wet tissue paper. During the operation is the worst time ever, your tiny little girl who has fought to survive is now having an operation. We must have aged 10 years each hour of waiting. Finally, the consultant came through to tell us that Holly had come through the operation fine but wasn’t sure it had worked. We will never forget that man, he was so indifferent and uncaring it was so unbelievable, he was telling us devastating news that our little girl had little or no sight and all he did was stare at a painting on the wall and even said “what a lovely painting, wonder where it is”.
We were extremely upset, naturally but we both looked upon the situation as at least our little girl is with us, it could have been so so different.
There were other children in the Neo-natal unit of St James’ that we got to know the parents and saw the little children who when we visited the following day were not around as the child did not survive. Strangely the staff told us girls were the survivors; we did find that to be the case.
Eventually Holly was allowed to be moved to our local hospital Special Care baby unit, where Holly remained until her actual birth date. The day she finally came home was a day to remember, not only for the fact our little girl was coming home with us for the first time, but was the worst overnight snow in living memory, we had to dig the car out – literally.
Holly’s formative years were sometimes eventful, once the Social Services are aware there is a ‘blind’ child in the family, they seem to do everything they can do to take over your day to day family, but we were firm. But we treated her as you would any child and she played as others did. She rode a bike, had pets, helped her Dad in the garage using tools, and took the dog for a walk. We did not wrap her up in cotton wool and mollycoddle her. One amusing thing that Holly did, most kids learn by ‘cause and event’, Holly kept pushing the eject button on the video recorder, out the cassette holder popped, push it back in, repeat, repeat. Then she used it as a toaster, she filled the video recorder with toast!