Being a Mum with Progressive Vision Loss
Sometimes, as a mum who is losing their eyesight to Stargardt's, I often wonder why me?
Why do I have to have this? And why does it have to be something that is taking away a good portion of my precious eyesight? I look at other mums on the school run and wonder what it would be like to just worry about some of the usual mum stuff. What after school clubs my children should attend, stocking up on the food shopping and keeping on top of general errands. Anything except having this massive weight on my shoulders daily and the worry of this disease and my future.
I wonder what it would be like to be able to look at my children and not sit there wondering how long I have left to be able to see the majority of their faces and how long I will be able to run them to their favourite places before my driving license is taken from me.
Feeling alone in my vision loss
The truth is, I have no idea what the other parents are dealing with daily, or how they are feeling. So I try not to feel so hard done by, but vision loss at this age can be a lonely thing to go through. I am aware that I am the only mum at my son's school going through progressive vision loss. I can meet up with other mums to discuss the sleepless nights, weaning our babies, and further down the line, potty training, but there isn’t anyone else who I can meet up with to talk about all of these things whilst losing eyesight too.
Mum going blind
The fact is, as a mum going blind, I know I don’t have time, so I appreciate every little moment with my children, rarely taking anything for granted and really appreciate what I can still do and see with them. We draw together and I enjoy helping my eldest with his homework, I watch him in every school performance and any sports he takes part in. We go searching for tractors over the fields, riding our bikes across the fields and pond dipping to see what we can find. I make sure to take in as much of their faces as I can still see each day and when my eldest is talking to me, even if I am in a hurry, I will take the time to face him and talk.
Before I knew I had Stargardt's, I was often in a rush. I didn’t manage my time well, but this disease has taught me that the less important things can wait. There is always time for the important things that matter. I am actually very grateful to Stargardt's for making me a much more understanding and carefree mum and to really enjoy the beauty of childhood whilst losing my vision. I never thought I would say this but thank you Stargardt's for giving me some precious time back and enabling me to be the best mum I can be to my two boys.
Do you find it easy to advocate for yourself?