Through the parent portal: A VI child becoming a VI parent to a VI child

Growing up with a visual impairment, I never really thought about it much. There were much more important things to worry about like school drama, what’s on TV and how to get to the next level on the PlayStation game you’ve been obsessed with. I knew I was different, I knew it could limit me in certain ways, but ultimately, it occupied very little of my thoughts, and now becoming a parent to a VI child myself, I understand that a lot of that worry, frustration, and constant push for ‘normality’ stays prominently on the parents shoulders.

My mum tells stories of going from dance school to dance school trying to get someone to take me on, because they all wanted me to go into a ‘specialist’ class. – all I remember is starting a new dance lesson and absolutely loving it. Mum spoke of fighting every single year for support at school, for my autonomy and independence, all I remember is slightly overbearing but well meaning teachers, and a bunch of (at the time) modern tech that would make the rest of the kids in class quite jealous.

As children, we are born blank slates with no expectations, no pre judgements, and importantly, no limitations, which if you think about it is such a beautiful place to be! It’s our parents who shape us into who we become and I think it’s so easy to underestimate the efforts and sacrifices we make to ensure that feeling of limitless remains. Looking back on my childhood I would say it was relatively uneventful, pretty standard, pretty normal, and I don’t mean in a bad way! Because of my mum working away in the background, ensuring I had the same opportunities as my peers, it didn’t feel different a lot of time, and when I think about moments when I was made to feel different, incapable and vulnerable, it was at the hands of people who were not invested in me and my own success, who perhaps wished to make things easier for themselves instead of doing what was necessary to include me.

It’s been such a surreal and humbling experience becoming mum to a child who also had a visual impairment. I am in a unique position where I get to see through both sides of the glass, and that has given me so much respect for the parents before me continually fighting for their children.

August 31st 2023, my beautiful girl was born, a tiny 5lbs 6oz but completely healthy. I’ll be the first to admit that I found the transition into motherhood hard. I was in constant fight and flight, and whilst trying to drag myself out of the depths of postpartum anxiety, I had noticed concerns with Daphne’s eyes, I noticed, but kept it to myself, convincing myself that it was my own mental health spotting things that weren’t there. At our 8 week checks, the doctor did the standard eye tests and was immediately concerned. He asked me if I had concerns and it was the first time I let the words leave my mouth and hang in the air. We left that appointment with a referral to ophthalmology and I spent the 30 minute walk home crying, my heart heavy. January 2024 and the diagnosis came, “she’ll likely have a significant visual impairment”. It was like my world was crumbling around me, weighed down by the incomprehensible guilt I felt for dragging my daughter into this world, it felt like the future I had envisioned for her and us as a family had died in front of me and the sense of grief I felt was immense. But with all that, I realised that it’s the parents who bear the weight of this kind of life changing information, and that’s the way it should be. Children should be able to grow and learn and develop, free from the burden of future, limitation and fighting for what is right, but that means that us mums and dads have that quiet fight ahead of us, and fight we must.

As much as the journey so far has been difficult, heartbreaking at times, full of sleepless nights brim with worry for the future, Daphne has been the one to take me gently by the hand and lead me back into reality, which despite all my misgivings, has been so beautiful up until this point. When people ask me about my daughter, I’ll tell them how she’s a little whirlwind, a force to be reckoned with if she has her mind set on something, a truly intelligent, inquisitive funny little girl who never stops talking. I barely ever mention her disability unless the context is there, because it doesn’t define her, just like it didn’t define me.

Once we started letting people know about Daphne’s diagnosis, the same comment I got again and again was “she has the best person to guide her” “you can show her the way” “ it’s fine though because she has you!” And I cannot tell you how much red hot rage each one stirred in me! Don’t get me wrong, all of those people were saying comforting supportive words, but at the time I was not ready, nor did I want to hear it. All I could see was the darkness, and it was Daphne herself, her determination every single day, her cleverness and adventurist nature, the way she surprises us every step with her skills and unflinching ability to adapt like an expert chameleon to every single situation to make it look easy as pie, that helped me see the light through the trees again, reminded me that I am where I am now because of that same determination, curiosity and stubbornness to live an exceptional life.

We have as a family been lucky enough to bring something new to communities we are apart of in terms of our own experiences, and despite my own self deprecating view that little ole’ me can’t possibly change a thing, others have seen the potential in what we have to teach in hopefully inspire others. I have recently had the pleasure of being involved in some amazing projects led by organisations dedicated to supporting the blind and visually impaired. I helped to reveal a total rebrand of British Wireless for the Blind Fund to Visably, have lead a workshop on managing mental health when supporting a visually impaired child, and sat on a parent panel for VICTA to contribute experiences to participants. These experiences have really helped me to realise that I do have something to offer, and that is reassurance to parents just like myself who might be terrified of the future for their children, yet I am living proof that with the right guidance and support, you can absolutely succeed in whatever way you want.

So what have I learned becoming a VI mum of a VI child? Parents fight tirelessly through a war of wills and advocacy to give their children the best chance, it can weigh heavily on our hearts and minds and feel impossible at times, but the real healer for all of us is seeing the children we are fighting for succeed in ways we never even knew was possible at the beginning. Ultimately, we lift each other up we need each other, parents push our kids forward and they remind us why we do it, so never stop doing it! Because you have each other for this wild ride!