We were almost in the pool?

Towels in hand, heading there when suddenly plans change.

No big announcement, no panic, the older sibling take control, ushers the youngest two to a neighbouring chair to sit down away from the commotion.

Plans change… the familiar pivot.

The kind that happens so quickly it almost feels rehearsed. A seizure again. Plans change again.

The pool sits outside untouched.

The hardest part wasn’t the pivot, wasn’t the change but how quickly the other kids do it without question. But still with a silent panic etched on their face.
They never complain, the never sigh, they never ask why, as they already know.

When one child is struggling, whether it is with autism, epilepsy, or something else siblings know. Well my children do.

They adapt, they change plans, they never complain. They know how to be ok, even if they are not.
As they love their sister, and watch her struggle seizure after seizure.

They watch her struggle and don’t want to add to the weight she carries, but in turn they carry the weight too.

So they adapt.
They adapt mid holiday,
Mid dinner
They adapt because they have too.
They adapt because they care.
 
But there is a quiet grief in this, a grief in the change plans, a grief in the pain, a grief in the fear.
 
I know they don’t want to feel sad,
I know they don’t want to feel selfish, but I imagine there is a disappointment that settles in.
When swimming becomes movies back in the hotel room.

As a parent you hold so much feelings.
The feeling of grief watching your child suffer seizures, unsure when you will find a solution.

Gratitude for the amazing family you have and the moments you share.

Pride watching your children step up to support and also step back when needed.

But then heartbreak knowing that they have too.

My children are learning resilience, compassion, empathy, and kindness.
I wanted that for them, I just wish it wasn’t with such a cost.

As we were almost at the pool.

Now we are back at the hotel room, towels dry, googles unused.

But we will try again as this is what our life looks like now.

But it won’t always be like this.