Since being diagnosed with macular dystrophy (an umbrella term) in 2012 and finally, Stargardt’s Disease, in 2013, aged 23, I have learnt to adapt and to lean on others for support, in order to navigate life with degenerative sight loss. But what happens when I’m the one who needs to be completely responsible for my own little one?!
I’m delighted to say that in June this year, my husband Josh and I welcomed our little boy Ezra into the world. Having a child is something we’ve wanted for some time and he is bringing us so much joy. We love his smiles and his fun character, his cuddles and his big blue eyes. But of course, there are, and have been, anxieties about the inevitable challenges of motherhood with central vision loss.
There was the time in my third trimester of pregnancy, when I couldn’t find just 5 ingredients for a meal in a local grocery shop without asking for help to find every single item, and I questioned - “how can I be a Mum without simply buying a few groceries and cooking dinner?!”
There were the times during my hospital maternity care when I was told to read the leaflets and important guidance on vaccines, feeding or gestational
diabetes, and I was not offered a digital version despite asking.
There have been the times when I’ve been refused to have anybody with me during medical appointments for my son, when I’ve been asked questions I cannot answer due to the level of my vision.
There are the times I hunt for a lift or a baby changing facility, without being able to read signs.
There are the times when someone else is holding my son and I can’t tell whether he’s asleep or awake, smiling or not.
There have been the times I look round at a room of other mothers and babies at baby classes and it just looks like a room of silhouettes, and I’ve wondered how I will recognise those I’ve chatted to, the following week.
There have been many times waiting for taxis to arrive or hunting for a bus (both difficult with sight loss!) when I’ve wondered how much easier it would be if I could still drive.
There are the times when my little boy looks me in the eye, and whilst I’m so grateful that I can use my peripheral vision up close to notice this, I wish that I could just look
straight back at him and give him that all-important eye contact.
Stargardt’s Disease affects the central vision: wherever I look, there is a missing patch of vision which is grey with bright flashing lights over the top. I am fortunate that Stargardt’s has not affected my peripheral vision (it does for some), so I can see with my peripheral. However, central vision is what deals with acuity and colour, so what I see outside of the missing patch is neither focussed nor detailed. It is hard to imagine, but put simply I cannot see faces further than 1 metre away and I need a huge font (size 80+) to read it comfortably.
Over the past few years I have learnt to use adaptations (such as the accessibility features on my phone and computer, and magnifiers), to ask for support and to communicate my vision loss with others. As I emerge from the ‘fourth trimester’ and settle into motherhood, I’m so grateful for the support I have had so far and for the ways I’m already learning to adapt.
This ranges from brightly coloured muslins that I can find more easily around the house, friends waiting on the street to wave at my Uber driver, meals that have been cooked for us and simple recipes sent over, to help labelling lots of tiny clothes with thick sharpie pens.
I’ve learnt to rely on dictation and voiceover on my phone now that I rarely have two hands free to zoom in! I’ve learnt to rely on the help of family, friends, a doula and a support worker, enabling me to fully embrace motherhood.
The first few months of motherhood have been an absolute joy, and like for many new mums, I’ve been learning and growing every day. Yes, sometimes I worry about not being able to find Ezra when he’s no longer a tiny baby constantly within arm’s reach, but I know that I will continue to adapt and learn new techniques to navigate motherhood with sight loss.
A huge thank you to Greg George for training for and running the London Marathon for Stargardt’s Connected, a new and growing charity, aiming to raise awareness of Stargardt’s, to build community and to find a cure for Stargardt’s Disease. I have personally benefitted from the support of the charity’s founder, Bhavna, and the whole community, over the past few years.
Greg’s Just Giving page is below. Please share and if you are able to donate, this would be so appreciated!