Is the grief experienced by the loss of a loved one who is still alive.
This is what we experience with Ethan every day.
We are beyond grateful that he is still here with us, that he is alive, but we also grieve who he used to be. Who he would be right now had his brain injury not happened.
It’s the would have, could have, should have beens.
While we don’t grief the loss of his life, we grieve the life he would be living right now. We would be living right now.
The walking, talking, playing.
It’s a confusing type of grieving, I find.
Because he’s here.
It’s a type of grief that comes with guilt, because I then feel like I should simply be grateful he’s alive, which I am.
But it creeps in, everywhere, all the time.
Whenever he learns something new, it pops its head out because “he’s done this before”.
Whenever we do anything as a family it pops up because “Ethan would and should be doing __ right now”
I look back at old photos and videos and miss THAT part of Ethan.
The sitting, nearly walking, starting to talk Ethan. The Ethan who had the coordination to blow his nose, clean his hands, chase after his brother, clap.
Ambiguous Grief is not talked about enough.
It’s something I didn’t hear about for MONTHS. And I heard it from another brain injury mom.
I remember feeling such relief. Almost happiness, that what I was feeling was actually something, known. Yet not known enough.
For so long I was left in this weird state, having absolutely no idea that it has a name.
That it’s a real thing.
That I’m not crazy or alone for feeling like I am.
It’s still so hard.
But it’s real.
And I’m scared it won’t ever go away.
So if you find yourself in this weird, lost, confusing place where you’re grieving what would and should have been, know that you’re not alone.
What you’re feeling is valid.
But you’re not alone.
Don’t forget that.