Big Red Stroller

I was six months pregnant when I was diagnosed with a macular degenerative disease called Stargart’s. For some reason, it didn’t really sink in that I would gradually lose sight of my children, despite significant vision loss during and after both pregnancies. The consultants I saw at the time had high hopes for a comfortingly gradual deterioration. 

Now that the girls are one and three years old, it’s difficult to ignore the stealthy smudging and blurring of their beautiful faces as Stargardt’s takes hold. It’s hard not to wonder how life will be once the last shreds of vision have disappeared. And It’s difficult not to feel the poignancy of teaching Sophie to read while I learn to do without, or watching Alice exploring new horizons while mine grow fuzzy around the edges or disappear altogether.

Fortunately, young children don’t leave much time for any kind of contemplation. Instead, we just get on with adapting to what is quickly becoming our new normal. 

Sophie instinctively knows when to fill in the gaps with vivid descriptions of what she’s doing and how she’s feeling, or where she thinks Alice might be hiding this time. Alice is still oblivious but follows her big sister’s example and brings me things she wants me to se. Which, in Alice’s case, could be anything... 

For now, neither of the girls mind wearing brightly coloured, stripy clothes so that I can keep track of them at the park. They’re over the moon when Steve reads to them instead of me, and they still believe that we can go anywhere we might ever need to go in the ‘big red stroller’. They’re perfectly happy playing catch with a ball so big there’s no chance I could miss it, and Sophie is excited about riding the yellow bus to school when she’s bigger.

I’m sure there will be some bumps along the way as the girls grow, life changes and my vision worsens, but for the moment, we seem to be doing just fine.