Do you remember the moment? The room where everything changed?
The meeting with medical professionals where words you never imagined hearing became your reality. The diagnosis. The statistics. The treatment plans. The questions you couldn't even begin to form because all you could hear was the pounding of your own heart.
I remember feeling like the walls were caving in around me. I was in a state of shock, complete numbness took over my body.
The numbness that spread through my body. The way the room suddenly felt too small and too quiet all at once. Looking at my beautiful little boy and wondering how the world could keep turning when ours had just stopped. He was sitting there, right at my feet, playing with his blocks and stacking them on top of each other, one after the other. I knew something wasn't quite right, but this? Really?!
We were told that our son had a limited life expectancy. That the likelihood of him making it beyond his fifth birthday was quite slim. A rare genetic disease that only had 800 worldwide. Why us? Why did our son have to be part of that 800?
How do you walk out of that room and continue? How do you go home and make dinner? Fold the washing? Answer messages? How do you tuck your child into bed while carrying the unbearable weight of what you've just been told?
The truth is, I don't think any of us know how. You don't magically become brave. You don't suddenly stop being terrified.
The future is scary. The unknown is overwhelming. The heartache feels impossible. But somehow, you take the next breath. Then the next, and the next one after that.
You show up at the appointments. You learn the medical lingo you never wanted to know. You become an advocate. You celebrate the milestones others may take for granted. You find joy in the smallest moments because you understand just how precious they are.
You continue, not because you're fearless, but because your child needs you.
And if you're reading this, while sitting in that fear, fresh from a diagnosis or carrying the weight of an uncertain future, please know this: You are not alone. You don't have to have all the answers today. You don't have to know what tomorrow looks like.
Right now, all you have to do is take the next breath. The rest will come, one moment at a time.
Kait x