01/12/2026
💙💙
Anticipatory Grief
This isn’t something I particularly like to speak about for obvious reasons.
But when my feelings get the best of me I cope by writing and sharing those feelings.
So here we are.
When my child was diagnosed with a life limiting condition I was struck very quickly with a sense of grief.
Before I could even fully process what doctors had told me, a million thoughts had run through my mind “I’m never going to hear mama” “I’m never going to see her do this or that” “I’m never going to experience normal again”.
This grief hurt, but this grief was expected.
I had lost the child I thought I was going to have.
Over time that grieve faded.
We fell into our own sense of normal.
But with her prognosis also came anticipatory grief.
A feeling of inevitable loss.
Waiting for that moment where everything falls apart.
It isn’t always at the forefront, but it is always slightly lingering.
With every seizure,
with every illness,
with every hard day and hard decision, that lingering feeling grows.
It’s a hard truth that cannot be escaped.
Nobody prepares you for this feeling of grief.
Nobody warned me I was going to grieve my child so deeply while she’s still living.
Nobody explains that it is a normal feeling for parents of children with a life limiting illness.
So, I’m here to say anticipatory grief is real.
It’s raw.
It’s emotional,
AND it is normal.
Be kind to us moms when we speak about losing our child who is still here.
We are not morbid,
we are not pessimistic,
we’re simply living out a reality that most are lucky enough to not understand.
Written by: Carla Moore from Payton's Path
