6 Years Since Diagnosis Day & RareWear Turns 3!
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17th December 2019 - 6 Years Ago
December seventeenth split my life in two
before the words,
and after.
I was twenty-years-old and still believed
love could protect us from everything.
Lloyd was two and a half
Clumsy hands, honest smiles,
a laugh that filled rooms
I didn’t yet know would become hospitals.
Elsie kicked beneath my ribs,
twenty-eight weeks of quiet hope,
a sister growing while her brother’s world collapsed.
After:
A room too small for the sentence that landed.
*IQSEC2-associated neurodevelopmental disorder.*
A name heavy enough to crush futures.
Permanent.
No clear prognosis.
Just a list of inevitabilities,
each one a bruise before it arrived.
Epilepsy.
Vision loss.
Feeding battles.
Mobility stolen.
Speech that may never come.
And the cruelest part
And more we don’t know yet.
I sat there alone,
nod, nod, nodding like I understood,
like my heart wasn’t tearing itself apart.
Six others in Australia, they said.
Six.
As if rarity softens the blow.
I walked out carrying a diagnosis
that felt bigger than my body,
bigger than my unborn child,
bigger than the life I thought I was living.
And then I had to go home.
Had to look at the man I loved
Lloyd’s dad
and say the words out loud.
Watch them break him
the way they had already broken me.
There were tears that never dried.
Guilt that nested in my chest
*What did I do wrong?*
*Was it something I ate, missed, was?*
What-ifs that screamed at night,
dreams erased mid-sentence,
futures burned before they were lived.
I mourned the child I imagined
while loving the child in front of me,
and that grief nearly swallowed me whole.
But December seventeenth did not end there.
Three years ago,
from the rubble of that day,
I built something with shaking hands.
An adaptive clothing business (Rarewear)
not because I was ready,
but because I refused to let the diagnosis
be the only thing that survived.
I turned pain into purpose.
Fear into fabric.
Loss into something that could hold others
the way I wished someone had held me.
This life is hard.
It is chaotic.
It is exhausting beyond language.
There are still appointments, seizures,
unknowns waiting in the dark.
There are days I ache for the mother I used to be
naive, untouched, unafraid.
But my children saved me.
Lloyd, with his resilience that rewrote strength.
Elsie, who arrived into a storm
and became light.
They gave me direction
I never would have seen
if my world hadn’t shattered.
They taught me that joy can exist beside grief,
that love can grow deeper in broken places,
that purpose sometimes arrives disguised as devastation.
December seventeenth changed everything.
It took my certainty.
It took my innocence.
But it gave me something fiercer
gratitude that survives grief,
love that adapts,
and a life I never planned
but now cannot imagine leaving.