Living with sight loss: A Q&A with my parents

I’ve been thinking a lot recently about how my vision impairment affects those around me, people such as my parents and my brother especially. If you read this post then you’ll remember me saying that I believe that disability not only affects the person living with it but also those around them.

Sight loss can be a difficult journey, for the person living with it but also their family and friends. I don’t recall the day I was diagnosed as I was only six years old but I know that it must have been a difficult day for my parents, the two people who I am so lucky to have had by my side throughout this entire journey.

A Q&A with my parents - A photo of a heart shaped slate, heart shaped jewelry pot and a quote on my phone that says 'sometimes the things that can't be changed end up changing us.

After publishing the blog post with my brother a couple of weeks ago and gaining a better understanding of his perspective on my vision impairment, I realised that I don’t know the full extent of how my sight loss affects my family. I’ve never asked my parents about the process of diagnosis, how they felt during that time, what support they received etc so I thought that should change today.

I decided to ask them a few questions about their thoughts and feelings with regards to having a daughter who is visually impaired and I thought I’d share those answers with you on my blog in the hope that it might help someone else out there.

I just want to say before we begin that I am beyond grateful to my parents for all the support they have given me over the years. They have gone above and beyond on more than one occasion to make sure that I receive the support I’m entitled to and they have always been there for me to make me feel better. I know I’m very lucky to have them along with my brother by my side, something I’ve never taken for granted.

With all that being said, let’s move on to the questions.

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 process of diagnosis?

It was a very long and hard process. 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 but we needed to stay strong and focus on leading our lives in the most normal and positive way. We tried to put the diagnosis to the back of our minds because we didn’t want to dwell on the negativity of the situation.

4. How much did you understand about Retinitis Pigmentosa when I was diagnosed? Were you given any information/support?

We didn’t understand or know anything about RP prior to your diagnosis. It was quite a shock and it was very distressing to read up about all the information we received. We read up about it online and felt saddened by what we read and discovered.

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.

5. Were you ever afraid that my brother would also have a vision impairment?

Yes, it was a question we raised many a times with the ophthalmologist. We went to see a genetics team on more than one occasion, they informed us that it was very unlikely that Meilyr would also have sight loss so this put our minds at ease.

6. How do you think living with sight loss has impacted/affected my life?

At the beginning, we don’t believe that it affected you as much as it did when you were growing up as you didn’t understand it and you didn’t realise how much other people could see compared to you. 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.

We also feel like 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. Adaptions have had to be made to many aspects of your life, we think that this is one of the reasons why others saw you as being ‘different’ because your school work had to be adapted whether it be into large print or braille and you obviously have to be guided places or use a cane. 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 learned to accept your vision impairment, although it’s been really difficult at times. We’re now really proud of how positive you are and of all the things you have achieved despite of all the hurdles and barriers you’ve had to face and overcome.

7. What has been the biggest challenge for you in terms of my vision impairment?

One of the biggest challenges is seeing your vision deteriorate, especially after we thought it had stabilised. It’s so incredibly worrying for us when you experience the black outs you have and when you have to face all the barriers you come across.

It’s also 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. Do you think that my vision impairment changed our family life in any way? (Where we’d go as a family, what activities we did etc).

Not particularly, we have always tried to lead a normal family life.

A photo of a black pair of glasses and a quote on my phone that says 'sometimes the things that can't be changed end up changing us.'

9. Do you think that people need to gain a better understanding of sight loss?

Yes 100%. There are so many misconceptions surrounding sight loss and we think this needs to change. We believe that more places need to carry out awareness training for sight loss in order for people to gain a better understanding which would allow you to have a more pleasant experience when going out independently.

10. What would be one piece of advice that you’d give to other parents of visually impaired children/young people?

We would definitely suggest talking to other parents who are in a similar situation. We’ve never been open about your vision impairment with anyone but since starting to talk about it with other people, we’ve definitely found the benefit. It’s comforting to know that we’re not the only ones going through this.

Thank you so much to my parents for taking the time to answer these questions for me. They are two of the strongest and courageous people I know and they’ve always encouraged me to approach life in the most positive way I can. I can’t thank them enough for everything they do for me.

Are you a parent of a child/young person with a disability? How has it impacted your life and how do you deal with it in your day-to-day life? I’d love to hear from you.

Elin x

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6 Comments

  1. April 15, 2018 / 8:51 pm

    What a lovely post! I remember reading the post where your brother answered questions a few weeks ago and I also found that interesting. I don’t remember if I commented or not on it, however. I, too, have RP. I am much older than you but am also a blogger on vision loss and an advocate of those coping / living successfully with RP / vision loss. In fact, I’ve written two books on coping with RP. Both my parents have passed away now. I wish I could have asked my own parents similar questions. Bravo, Elin! Great blog post and certainly a valuable post to share. Keep up the great work!
    Sincerely,
    Amy Bovaird

    • myblurredworld@gmail.com
      Author
      April 16, 2018 / 5:42 pm

      Thank you so much Amy, that means a lot! I will definitely have to check out your blog. Wow, that’s great! Your books sound really interesting. It’s great to hear from someone else who has RP. Thank you for reading 🙂

  2. April 15, 2018 / 10:16 pm

    I really enjoyed reading this post, it was so interesting to read your parents answers to the questions. I’m sure many parents who have a child with a vision impairment will find this post very useful xxx

    • myblurredworld@gmail.com
      Author
      April 16, 2018 / 5:43 pm

      Thank you so much my lovely. Glad you found it interesting xxx

  3. May 31, 2018 / 3:43 am

    I really loved reading this! You are so inspiring girl! I just found your blog and I am loving going through and reading all of your posts! You have such an amazing blog, girl! I can’t wait for more posts!

    Taiya Maddison
    http://www.taiyamaddison.com

    • myblurredworld@gmail.com
      Author
      May 31, 2018 / 9:30 am

      Aww thank you so much, that means a lot! 🙂

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