When I was diagnosed with Retinitis Pigmentosa aged six, three years after my initial symptoms were noted, the life that stretched before me collapsed into a different reality in which my family and I never expected we’d have to navigate.
Despite my positive nature, discontentment has been lodged in my heart for years as I experience the grief that comes hand-in-hand with the realisation that my world is fading before me. But I know for a fact that the unpredictable nature of my sight-stealing disease has left its mark on my parents too.
I’ve captured many of my own thoughts and feelings within innumerable articles and blog posts I’ve written over the years, but today I want to shift my focus by quizzing my parents on their perspective of the diagnosis and the consequential affects of vision impairment. I strongly believe that sight loss not only affects the person experiencing it but also those around them and so, I hope that their answers can act as some form of reassurance to other parents/carers of blind and partially sighted children and young people.
My parents have solemnly admitted that they haven’t always utilised the support that is out there and I’ll hold my hands up by saying that I adopted their reluctance when growing up. But over the past few years, we’ve truly recognised the value of reaching out, asking questions and seeking support whether that’s via a charity or by talking to others in a similar situation. With the positives of all of the above becoming clearer to us, we also value the gravity of being open about our feelings and hearing others’ experiences. That’s why we’re here sharing our story.
1. How did you feel when you first realised I was losing my sight?
When we first realised you were having problems with your sight, we were quite confused as there was no history of sight loss in the family. You being our first child, we weren’t particularly aware of what children could see at that age anyway. But it was a very daunting prospect and quite a difficult time.
2. What was it like to go through the diagnostic process?
It was a very long and hard process. Anyone who’s going through or has gone through the process can appreciate the gruelling aspects of it. We had numerous appointments with various professionals and it was quite frustrating at times as it took three years until the diagnosis was final. Numerous tests were carried out and they were repeated in every appointment. It was quite hard to see all the different tests being carried out on you and as we said before, it was all very daunting.
3. What affect did my diagnosis have on you?
It was a very difficult time for us and we weren’t always the best at acknowledging the diagnosis since we found it all quite overwhelming. But we tried to stay strong and focus on leading our lives in the most normal and positive way we could.
4. How much did you understand about Retinitis Pigmentosa when I was diagnosed? Were you given any information/support?
We didn’t know anything about RP prior to your diagnosis. It was very distressing to read up about all the information we received. We made the mistake of Googling the condition which wasn’t a wise move since we felt more disheartened rather than reassured from what we read. However, with the rise of blogs we do feel like there is much more valuable information out there these days which is such a positive thing.
The hospital gave us numerous leaflets with the numbers of different helplines and we were asked if we wanted to attend any support groups but as it was all very raw at the beginning, we decided against that as we didn’t feel ready or comfortable to talk to anyone else about it at the time. Looking back now, we definitely think that reaching out to someone in a similar situation would have been beneficial, perhaps we were just more stubborn at the time, believing that we were fine standing on our own feet.
5. Were you ever afraid that my brother would also have a vision impairment?
Yes, it was a question we raised many times with the ophthalmologist. We went to see a genetics team on more than one occasion, they told us that it was very unlikely that Meilyr would also have sight loss so this put our minds at ease. It’s obviously not the same for everyone so it’s something we’ve always been very cautious of and we think it’s only natural to have those worries.
6. From your perspective, how do you think living with sight loss has impacted/affected my life?
At the beginning, we don’t believe it affected you dramatically since you didn’t understand it and you didn’t know how much others could see compared to you. We always gave into your pleas when you wanted to do things because it was important to us that you experienced the things that other children did. There were bumps and crashes along the way of course but they were all a part of the journey and they helped you to learn what you could and couldn’t do. The times it impacted you most was when you went to things such as birthday parties since you couldn’t see to interact as much with the other children. It was also quite sad to see when you stood alone on the school yard when others would be playing and running around as you couldn’t see to join in.
It affected your school life quite heavily as people didn’t understand what sight loss meant and they saw you as being different. Something that we never saw as being fair since, to us, you were always a bubbly, chatty, girl who was always ready to get stuck in. Adaptions have had to be made to many aspects of your life of course in order to make it more accessible, however, you’ve always taken these adjustments in your stride and we’re proud of you for that.
As you’ve grown up, you’ve definitely learned to accept your vision impairment, although it’s been difficult at times. We’re really proud of how positive you are and of all the things you have achieved despite all the hurdles and barriers you’ve faced.
7. What has been the biggest challenge for you in terms of my vision impairment?
Initially, it was tricky to adapt to this new card we had been dealt, there was a lot of information to take in and we had to learn what was and wasn’t possible. We resorted to taking one day at a time when things got very difficult because that was the best way of coping with the situation.
It’s difficult for us to witness the deterioration in your eyesight too, we’ve wished for a magic wand so many times!
We’ve also been very aware of the misconceptions over the years, it’s challenging to see how other people treat you at times. One of our main frustrations is when people talk to us instead of you, they don’t realise that you can speak for yourself which is something that has annoyed us many times in the past and still does to this day.
8. What do you think was a turning point for you in terms of this sight loss journey and perhaps looking at it in a different/more positive way?
We’ve tried not to dwell too much on your vision impairment, that might have potentially been damaging at times since we were always reluctant to talk to others in a similar situation, it made everything more real in a way. But we’ve definitely found comfort when talking to others who can relate to the experience and we’d encourage anyone to seek support.
There’s not one momentous turning point that stands out but seeing you become more confident in talking about your condition and seeing you smile even in the darkest times encouraged our own smiles too. It’s difficult to see the affects RP can have on you but as you take everything in your stride, we’ve been able to recognise the positives it can bring to your life too which brings so much more light to ours.
9. Do you think that people need to gain a better understanding of sight loss?
Yes, 100%! There are so many misconceptions out there which need to be tackled. We believe that more places need to carry out sight loss awareness training in order for people to gain a better understanding which would allow you to have a more pleasant experience when going out independently.
10. Finally, could you give one piece of advice to other parents/carers of vision impaired children and young people?
We definitely don’t feel expert enough to be dishing out advice since we’re still learning new things every day. However, we certainly realised that wrapping you up in cotton wool was never a good option no matter how much we wanted to at times! It’s important to let children explore, try new things and find what does/doesn’t work for them. You’ve always been adamant to try new things whether that was cycling, helping on the farm or trying your hand at horse riding so it was important that we let you explore those options and let you learn your own limits. We had our hearts in our mouths when you whizzed downhill on your bike but letting you have that freedom was so important to us.
Also, we would suggest talking to other parents who are in a similar situation. We’ve never been open about our experiences with anyone but since starting to talk about it with others, we’ve definitely found the benefit. It’s comforting to know that we’re not the only ones going through this.
I hope this Q&A entry helped to highlight some of the worries, grievances and curiosities my parents faced over the years. Whilst I couldn’t see the different emotions flitting across their faces as they answered these questions, I could hear the emotion in their voices and I fully appreciate the difficulty of opening up about such an intensely personal topic.
It’s not often that we stop and say thank you to our loved ones for being there, for guiding us through the difficult times and for being strong for us when we’ve faltered. So I’d like to take this opportunity to say thank you to my parents for their unwavering support, for going above and beyond to ensure that I had access to the support I was entitled to and for picking me up when I felt myself slip. Their support is something I’ll never take for granted and I know that I’m very lucky to have them by my side.
There are so many feelings and emotions entangled with the concept of sight loss but my parents’ support has always been a beacon of sanity and positivity amongst the chaos. Thank you just doesn’t seem enough somehow.
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