What It’s Like to Be a Blind Mum

Growing up I enjoyed looking after my younger siblings and cousins, so I knew I wanted children of my own one day.  However, when I was 17 years old I was diagnosed with retinitis pigmentosa and told that I would lose my sight in the matter of weeks, months or years.

I stopped dreaming about having my own family again until I met my future husband at the age of 21.  Soon after I got married I was blessed with my first beautiful daughter.  This was also when I noticed that my eyesight was deteriorating for the first time since my RP diagnosis.  Because of this, I became a very hands-on mother.   I needed to feel things as I couldn’t rely on my eyes to see.  Moreover, when my daughter started to walk I had to find ways to be able to locate her.  I’d dress her in brightly coloured clothes and shoes that squeaked.

Four years later I was blessed once more with my second beautiful daughter, and unfortunately found that my sight was deteriorating further.  My eldest daughter was a big help in being my eyes. For example, she would read to her baby sister, which was something I could no longer do.  Being a VI mum of two girls was challenging at first, but I taught my daughters to be aware of my sight loss, and they have good knowledge of my eye conditions and mobility aids like the white cane.  I feel confident to rely on my daughters to guide me and give me verbal cues when I’m out in public or at home.  I’m very proud of them both.

Finally, I’d like to say to all VI mum out there that you are doing an incredible job.  Keep on being the great mum that you are!  If you’re vision impaired and thinking about starting a family with your partner it’s natural to have lots of questions.  A genetics counsellor would be your first point of call if you’re worried about passing on your condition.  I would also speak to other visually impaired parents.  There are plenty of blind parent’s forums online to ask questions and seek advice and information.

What can I say?  Being a mum is an amazing experience and I love being a mum to both my wonderful and perfect daughters.

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Image of Bhavini in a bright red dress with her two daughters.

Listen to my latest podcast about my journey into becoming a mum and living with a visual impairment.  I reveal how I overcame some of the unique challenges I faced as a blind mum, such as learning to bottle feed and dealing with my daughter’s tantrums.

Written by Bhavini Makwana

Edited by Ray Calamaan

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Bhavini’s Experience at the RP Fighting Blindness Conference

The RP Fighting Blindness Charity held its first Families Conference earlier this month which saw around 30 families come together to meet others who have similar Retinal Dystrophies all going through the same situations.

Guest speakers shared their knowledge on the latest research, genetic counselling, support services available to both adults and children affected, as well as inspirational stories from those living with RP but have gone on to achieve their ambitions and not let their vision impairment hold them back. The members who attended were able to spend time with each other during the weekend and so did the children over activities that were planned for them. The workshops on offer for all to participate in provided additional sources of support and information.

As an ambassador for RP Fighting Blindness, I was invited to speak about my experience of living with Retinitis Pigmentosa. From a shocking diagnosis, moving to London, bringing up children, and then finally getting the support I desperately needed, I finally accepted and came to terms with my sight loss. I found ways I could relive my life; from volunteering, setting up a social group, organising charity fundraisers and now working for East London Vision.

“Was I nervous presenting at my first public speaking event? –most definitely. Would I do it again? – yes indeed.” I had learned that the biggest help and support I received was from another vision impaired professional who knew exactly what I was going through and how I felt. In fact, this is exactly what people said to me about my talk and how they could all relate.

Attending as a delegate was very useful, not only for me but for my family as well. My daughters met other children with vision impaired parents and children who were affected with sight loss too. It was a great opportunity for them to share their feelings over fun activity sessions and during times of socialising. Equally, my husband met other partners in the same situation and it was certainly a great bonding time for them. Moreover, I felt that my parents, who attended their first RP information day ever, found it extremely useful and engaging by talking to other parents and seeing how other people with RP cope and manage in different ways.

Overall, it was a fantastically organised weekend and very much-needed. It was a privilege to have been asked to speak at the event but at the same time thrilled to have been part of it; gaining and sharing lots of information, and connecting with others.

One aspect which I can take away from the weekend, and would love to share with others is – please talk about your emotional journey, whether it be to a family, friend or professional, as there is always someone who can help and you do not have to go through it alone.

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Photo of Bhavini standing in front of a RP Fighting Blindness poster at the RP Families Conference.

If would like to listen to my talk at the RP conference please click on the YouTube video directly below.

Written by Bhavini Makwana