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November 2021

‘So here we are again, in the race to stop vision loss. The eye redness, the light sensitivity, the rubbing, the pain induced cry, the poor sleeps and hazy eyes. And the eye drops, oh the eye drops... 

Image of smiling baby boy with beach in background

Yesterday we got the news that we are in for surgery two, and even though we knew, we hoped it wouldn’t be true. I let myself believe we were in the clear, even though I knew statistically and in my heart we were nowhere near. My heart aches. My heart hurts for you, and I know there is nothing I can do. I need to keep it together though, your strength is what I need. Please, help me follow your lead. It’s that smile in the morning that stops the tears from pouring. The thing is, I know you will be fine but that doesn’t stop me from wishing this problem was just mine. I don’t know why I’m writing this, I think it’s more for me than you. As I know, no one is tougher and more resilient than you. I can’t stop crying and now this thing isn’t even rhyming. I don’t care, this whole thing isn’t fair. 
Anyway, enough feeling sorry for myself, you’re waking from your nap, it’s time I wipe the tears away and get ready for the day. I’ll make sure that today is full of play, full of cheeky giggles and lots of tickles. You’ll never know the sadness I feel inside, I won’t let it show. Let us carry this burden, let us carry it for you. Let us shape your little world in a way that doesn’t focus on the upcoming surgery day. You deserve all the mango in the world, to watch the palm trees, play your piano and try all things new, like I don’t know, yummy marshmallow. 
You’re awake now, I need to get out of my head, give you a big kiss and take you from your bed. To everyone out there praying over your babies, know you’re not alone, if you need to chat remember to reach out’.

- Kayla

Image of young family with father, mother and baby boy, standing on beach