Happy Grief.
I've been searching for a phrase that explains what so many parents of children with profound disabilities and complex needs live with every single day.
The words that keep coming back to me are happy grief.
Happy grief is loving your child with every fibre of your being while grieving the life they should have had.
It's celebrating every smile while mourning the milestones they may never reach.
It's feeling overwhelming pride in who they are, while your heart quietly aches for everything disability has taken from them.
It's laughing together one minute and crying behind closed doors the next.
It's knowing you wouldn't change your child for the world.
.
but wishing with everything you have that their suffering, frustration, pain and limitations didn't exist.
For me, happy grief means grieving the life my son was entitled to have, while feeling incredibly grateful that I get to call him mine.
Both feelings are true.
Neither cancels the other out.
You don't have to choose between acceptance and grief.
You don't have to choose between love and loss.
As parents of children with profound disabilities, we often carry both at the very same time.
That is happy grief.
Maybe that's why so many of us feel so misunderstood.
People see our smiles and think we're coping.
They see our grief and think we don't accept our children.
The truth is neither.
We adore our children.
We grieve for what disability has taken from them.
Those two truths can exist together.
And perhaps it's time we had a name for it.
#Happy grief
Have you ever felt it?