Being A Mother with Retinitis Pigmentosa

Being a mother with Retinitis Pigmentosa and two young children is a hectic emotional rollercoaster, which as a family we are currently riding.

At home as a family  we have adapted and accepted my vision loss and are getting through it together.

The aggressiveness of which type of RP you have is different for each person. As it can be like a flower in full bloom, or a flower mid bloom, or waiting for the seed to slowly grow. Any stage is scary but luckily at the moment we are mid bloom so we can still enjoy a lot of family activities.

Being a mother is defiantly an incentive to carry on and smile everyday, as hearing their laughter is better than any vision I have.

But behind some smiles comes waves of frustration. The little things for example, jumping into the car to the shops or popping off to take the kids to a park. I always have to get lifts with someone and my independence as a mother has been taken away.  I am hoping that some independence will be restored when I have been found a match with a guide dog. I am looking forward to having a second pair of eyes helping me on a daily basis, a welcome addition to the family.

Being a mother with RP can get very hectic and crazy at times especially with a toddler which loves to run at any given moment and with only central vision left this can get a little tricky at times! Also I have a long track record of tripping over  and going flying on toys, dolls, skateboards, prams and my personal favourite getting lego imbedded in my foot. But I have learnt to laugh these things off as there is so much worse things happening in the world and I count my lucky stars that I have my amazing crazy family around me to keep my smile going.

By Lucy Applegate