‘We noticed wobbling in his eyes. My denial turned to heartbreak. ‘I can’t believe I passed on my problems.’: Woman learns to embrace blindness in herself and son, ‘I can guide him through life’

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“The beginning of my story, like most, starts when I was born. I was born with two conditions: nystagmus, which is a condition that causes my pupils to make involuntary movements, and optic atrophy, which is where my optic nerves don’t work like they should. This meant I was registered as blind at a very young age, I guess you could say that this didn’t come as much of a shock to my parents as my dad was also registered blind.

Growing up with a visual impairment didn’t really affect me as a young child. Thanks to my mom fighting for me, I still attended a mainstream school as I had all learning resources adapted for my needs. I never wanted to use a white cane as I just wanted to be like everyone else. Normal, I guess. I never questioned anything about my eye conditions. In fact, I wasn’t aware that my eyes involuntarily rotated until I was way into my late teens. I just knew I couldn’t see like my friends.

Courtesy of Lorna

Although my dad was also registered blind, sight loss was not something I grew up around as my parents split up when I was quite young. So the idea of losing the little sight I had never really crossed my mind. When I remember the vision I used to have, it makes me cross I didn’t make the most of it. It just never crossed my mind that I would have to face going blind like my dad.

As I got older and met my husband, my relationship with my disability changed. In a way, he helped me accept it. Throughout growing up, I consistently wanted to just ignore the fact that I was blind, and inevitably going blind. But my husband, in the nicest possible way, really didn’t care, because he loved me! In fact, he told me one of the reasons he spoke to me was because my eyes looked so cool when they were wobbling.

We met through mutual friends, and I vividly remember chatting with him one night, just the two of us, and he said to me that he knew about my eyes, and he thought I looked awesome. My eyes are what drew him to me because they look so different. He also said he could tell I wasn’t comfortable talking about it but would love to chat about it if I wanted to. This was so alien to me, because my eyesight was something that was never really acknowledged because of my continuing denial, and it was just so refreshing! He was so consistent with wanting to get to know me as well. Phoning me rather than texting is something I’ll always remember. It was just so considerate of him to call, as he wasn’t sure if I was able to see to text. At that point, I could use a magnifier to read my text messages, but the fact that he considered that I couldn’t was just everything. So thoughtful, and I’ve never experienced that.

Courtesy of Lorna

We have been together 10 years now, and I would say for the most part, he doesn’t treat me like I’m blind. Of course there’s a lot of things he does for me that he wouldn’t have to if I was sighted, like read menus and, to his continuing annoyance, finding my glasses as I am terrible at remembering where I put them. Obviously this reliance on him may become more prominent as I adjust to more inevitable sight loss, but he says this doesn’t worry him, and he is happy to learn how to help me. Words can’t explain how nice it is to know that I am facing my sight loss with him by my side.

He helped me, more than he will ever know, accept my disability. And he is the person who pushes me when I need it. He helped me pick up my white cane, and gave me the motivation I needed to apply for a guide dog.

Courtesy of Lorna

Growing up, all I ever wanted was a little family, and I thought I’d never find anyone who would want to have that with me because of my disability. I don’t know really where these thoughts came from growing up. More than likely: low self-esteem to do with my disability and feeling inadequate. I thought I wouldn’t be able to be a mom because I wouldn’t be able to care for a baby if I couldn’t see. Everyone in my world was sighted, so I assumed being a mom and a wife was unreachable somehow.

Courtesy of Lorna

When we decided we were ready to have children together, my blindness was never really brought up as an issue, my husband had faith in me that I would manage to be a good mom. He told me he wouldn’t have children with me if I had any doubts about it. Any time I brought up concerns, he told me not to worry, and maybe we just do things differently, and we would solve problems as we came across them. I didn’t think anyone would want their children to have a blind mom but I was wrong.

We were aware before having our children that they may be born with the same eye conditions as me, but when you want something that much it just doesn’t even come into the equation that that would ever be a problem.

Courtesy of Lorna

We had Rex in 2015, five years after meeting each other. We didn’t realize there was anything wrong with his eyesight until just before his first birthday.

My husband had told me he’d started to notice some wobbling in his eyes, but it wasn’t all the time, and maybe we were just overly worried as we were first-time parents. My initial thought was just complete denial I guess, but maybe that had a lot to do with not physically being able to see his eyes move. I think my husband and I were both of the mindset that we will see how it goes, and maybe will have to go to the doctors to get it checked. We then started noticing his head tilt, which is what people with nystagmus do to correct the wobble. Sometimes putting your head at a certain angle can make things easier to see. As soon as I noticed him doing this, I thought it was absolutely time to get him checked. When it was confirmed that he definitely had nystagmus, my denial turned to complete heartbreak for him, and I just honestly felt so guilty. It really did feel like the end of the world at first.

Courtesy of Lorna

After a few years of Rex being tested, it also looks like he unfortunately has optic atrophy. It is impossible to put into words how I feel about passing on my conditions to Rex. The guilt really does weigh heavy on me. It’s something I am still dealing with, and I think I always will really struggle with it. Going to appointments with Rex and seeing him go through all the poking and prodding I did as a child fills me with so much sadness. But I don’t think I’d change it. He is a wonderful boy, and I’ve got to see it as a positive that I know exactly what he’s going through, and hopefully I’ll be able to help him accept his sight loss now that I have begun to accept my own.

Growing up, I was just desperate to be normal, but on reflection, this desire has just held me back! I want Rex to embrace his disability and feel confident to embrace all that help that I refused for so long. I feel so glad that Rex is growing up in a time where having differences is embraced and celebrated.

Courtesy of Lorna

Rex is starting to understand his impairment already, he knows that mine and his eyes wobble. We call them dancing eyes and I tell him it’s because our eyes just can’t stop moving to the beat. It’s a bit cheesy, but it does make him smile- watching my eyes move and dance around. Genuinely sitting nose to nose with him whilst our eyes are in sync, it’s one of my favorite things to do.

He’s always asking if he can come and watch my eyes do some dancing. So we lay or sit in front of each other as close as possible and watch our eyes go crazy. It sends him into fits of giggles, and he really has the most infectious laugh. I love being this close to him because this is the clearest and best I can see him right in front of me. It’s really nice to soak in those smiles when I can see them.

Courtesy of Lorna

He’s already starting to embrace his impairment, and I hope I can help him continue on his journey to accept his disability. You would never know Rex had a visual impairment, seeing his eyes wobble is something you have to really pay attention to. He does everything a 5-year-old should do. He loves superheroes, Legos, riding his bike, and recently, has took an interest in wall climbing. He has no fear. I admire that so much in him. He’s a sweetest big brother to his 2-year-old brother, Wolfie, who so far has no sign of a visual impairment. It’s strange to say, but sometimes I find it harder being a parent to my sighted son than my visually impaired son. I guess it’s just a lot to do with being able to keep up with my sighted son. He is a wild child, with no words yet, which sometimes is a struggle as I rely on verbal communication so much.

Courtesy of Lorna

Even though Rex and I have the same eye conditions, he currently can see so much more than me. He absolutely loves helping me out on family walk, and sticks by me a lot of the time, holding my hand as we chat away to each other.

I love walking him to school each morning with my guide dog, Yarren. We have a game we do together that isn’t quite ‘I Spy,’ but uses that concept. We choose a topic and work from that, like ‘I Spy at the beach’ or ‘I Spy in space’ and we do things from memory as we can’t do it with the things around us.

In fact, a lot of the things we do together have to be different because of our impairments. Things like homework, that’s something Dad generally has to do with him. We don’t follow the rules of board games as it becomes too complicated. When we are out, just the two of us, if he wants to run ahead and have a bit of freedom we play the signal game which is basically us shouting ‘signal’ to each other with laser noises so I can always track where he is. Or he sometimes shouts, ‘I’m here, Mommy,’ which is also actually something he started doing in the house. If I enter a room talking to him, or trying to give him something he’ll always say, ‘I’m right here, Mommy,’ or ‘Wolfie is right there on the sofa,’ if I’m looking for his brother.

Courtesy of Lorna

I have recently started getting counseling through the RNIB for dealing with sight loss. I guess this has been integral to me accepting my blindness as before starting the sessions I would always think to myself, ‘I’m only going blind, what’s the big deal?’ When in reality it is a huge deal and a massive loss. I want to own my blindness, and be an excellent mom and role model to my sons.

I unfortunately lost my dad earlier this year, and never really got the opportunity to ask all the questions I wish I did about sight loss, and what it’s like to go blind. I wasn’t really at the accepting stage of my sight loss journey until recently. I think this missed opportunity has helped me realize that I must talk about sight loss with my son as much as I can, and normalize this process as he will inevitably experience it himself. It makes me feel so sad when he tells me about how he can’t wait to drive, or do something that is going to be unreachable or harder for him. But that doesn’t mean he can’t do it. I’m never going to tell him he can’t do something, he will just have to do it differently, with a little help. And that’s exactly what me and his dad are here for.

Courtesy of Lorna

Even though it is truly heartbreaking that I have passed my eye conditions on to Rex, I think it’s really important to find the positives in this. Because of my experience with sight loss, I am the best person to guide him through life. I am not just able to empathize with what he is going through, but I can completely understand, and hopefully he will be able to learn from me and my experiences. I wouldn’t have that understanding unless I couldn’t see myself.

Rex currently understands that his eyes wobble, and I’m so proud as he’s completely embraced that. He thinks it’s cool, he thinks we are both cool for having our wobbly eyes. It just gives us an extra connection, and such a strong mother and son bond. He is the most kind, grateful little boy, and I honestly wouldn’t change him. My boys are perfect and I’m so happy with where I am in my life. At the moment, I’m starting to accept my disability, and want to continue raising my children surrounded by love and understanding. Being different is awesome. Embrace it, and use it as an advantage!”

Courtesy of Lorna
Courtesy of Lorna

This story was submitted to Love What Matters by Lorna from Darlington, England. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about those living with sight loss here:

‘Her eyes were going back and forth horizontally, uncontrollably. ‘How do I tell everyone who loves them this?’ My husband was stunned.’: Mom births 2 blind babies, ‘We live joyfully every day’

‘Mom, look at THAT!’ my son yelled. I had no idea what he was referring to. It looked like just a plain storefront.’: Colorblind boy receives color-correcting glasses for first time ever 

‘You sure don’t look blind.’ It gets old. Every day, I am being robbed of my remaining vision.’: Woman with rare visual impairment urges ‘be kind always’

‘I asked the nanny, ‘What happened to his eye?’ I noticed it was red. Doctors assured it was ‘pink eye.’: Mom urges ‘throw them away’ after bath toy almost blinds toddler

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