Happy Mother’s Day to everyone celebrating!

In recognition of this special day, we sat down with our CEO, Julie, to hear about her relationship with her daughter, Saime, who is registered blind.

Could you tell us about Saime, Julie?

Saime was born almost 15 weeks early, weighing just over 2lbs. It was such a traumatic time, but after 9 weeks in hospital, she came home weighing 3lbs 3ozs. Life was dominated by hospital visits and scrutiny, initially triggered by her prematurity. Once we realised that Saime had an issue with her sight, things became even more intense – she was registered blind at 9 months. The medical experts told us that there was no treatment and that she would have no useful vision. Both eyes had suffered significant trauma; her right eye is totally blind, whilst a small part of her left is light aware.

From the start, Saime has been determined to succeed and maintain a life that’s as ‘typical’ as possible. She’s a super braille-ist, but also reads with high magnification to maintain the minimum vision that light perception gives her. She had a blended education in mainstream and specialist provision, achieving excellent GCSE and ‘A’ level results, then studied a BA(Hons) at the University of Chester before her Masters Rhetoric at UCLAN.

Saime adores the theatre and film; her life aspirations revolve around acting, directing and writing. She has written, directed and performed in her own works and those of others. She takes every opportunity to be on stage or in film – it makes her come alive. I’m immensely proud of her and her many achievements!

 

How would you describe your relationship with your daughter?

A typical tumultuous mother-daughter relationship! I did find it hard transitioning from being a mother of a child to one of an adult. With all children you are completely immersed in their life; but when your child has specific needs this is exacerbated. You have to make decisions constantly – but as adulthood arrives that changes (or should) to nurture independence. I like to think I’m especially close to my daughter, and that we have a unique bond. But I feel the same about my sighted son!

 

How do you typically celebrate Mother’s Day with your daughter?

I always enjoy lunch with my children, who are both now adults, on the day. It’s a lovely time to enjoy being with them, as we all live such busy lives. I love receiving a bunch of daffodils – it’s how I celebrated with my mum – and a hug! My daughter jokes that she searches for a card that’s not too ‘soppy’; she always seems find something meaningful nonetheless.

 

What message would you give to mothers who might be struggling on Mother’s Day?

I’d say, enjoy every moment with your child; they grow up far too quickly! Make time to just ‘be’. Life’s so hectic; enjoy bathtime, reading a bedtime story, or just being out in the fresh air. Find joy in being you and celebrate all that you and your children are.

Use a cereal box to make a card, even just for yourself, and let your child decorate it for you, perhaps a braille message or picture that they can do independently. If your child is light aware, they may be able to draw or paint something. If you’re struggling in any way with your child’s vision impairment, talk to someone; a friend or family member, or any of us at RSBC. We’re here to help, to listen, and hear your worries or frustrations.

 

Looking back, is there anything you wish you’d known sooner about raising a child with a vision impairment?

Make the most of the time you have together. I was overjoyed that my daughter survived such prematurity; being blind felt very ‘do-able’ at the time and I remember thinking ‘It’s fine, she’s only blind’. I didn’t experience the trauma of sight loss at a later stage; both circumstances bring different challenges.

I would’ve been a stronger advocate; initially, I was too bothered about not rocking the boat. As Saime became a teenager, I had grown into a more confident version of me and challenged exclusivity and discrimination much more forcefully.

 

How do you think being a mother to a daughter with a vision impairment has influenced the work you do at RSBC?

I would hope that my first-hand experience positively influences my approach. I’m absolutely committed to enabling blind and partially sighted children live their lives without limits, which means advocating for structural changes in society. I will lead from the front, loud and proud, to achieve that.

People talk a lot about ‘lived experience’ and yes, there is power in living through a specific circumstance, but it also brings pain. I have to be careful not to make myself vulnerable when recalling the peaks and troughs of our journey.

I do feel connected with our families and I understand what they’re experiencing, to a degree. However, I would never be so arrogant as to assume my life was the ‘same’; everyone is unique, with their own set of circumstances. But I can relate to the joy, the pain, the challenges, and the fear.

 

What advice would you give to mothers who are just beginning their journey with a child who has a vision impairment?

Talk, ask questions, seek advice from other parents in similar situations. Join groups, and speak to RSBC to get the help you need. Please don’t struggle, ever. The sooner we can work with you, the sooner we can make progress, because you and your child are important. Our children and young adults have so much to offer society.

Be the most confident and informed version of you that you can be and remember that every child is unique. Some have multiple needs and their vision impairment is only one part of their story. But it’s such a critical sense that we have to ensure that they have all the tools and skills to cope in this visually-driven world.

Finally, never despair. Together, we can challenge and change the systems that, at times, are not designed for our precious children.