Noah’s Journey 7 years on — New Years, New Beginnings is written by UKIST trustee Amy
The turn of the year
is supposed to feel hopeful.
new goals
new habits
new energy
a collective
exhale
but for parents whose child has a diagnosis
like infantile spasms
a new year feels
heavy.
you reflect on a year of survival
a year of hospital corridors
counting seizures
administering medication
quiet griefs no one sees.
the world celebrates forward motion
while you hold the line
of a life
you did not
sign up for.
I was that parent
living minute to minute
measuring life
in appointments
in seizures
in doses
in relapses
in medication side effects, terrified
to hope too loudly.
Each new year arrived carrying the enormity of a future ruled by my child’s medical needs.
And yet
here I am, arriving into 2026
at a day
I never dared
to believe would come.
Noah’s first day of medication freedom.
seven years old
so far travelled
down this path of infantile spasms and epilepsy.
His first sunrise
where epilepsy
and pharmaceutical medication
have no hold
over his little body.
Typing that still makes my breath catch.
five months of undiagnosed infantile spasms
that morphed into focal epilepsy
300+ seizures a day
2586 days of medication
administering meds 18 times a day at its peak
my son is medication free.
my son
is medication free.
This day
which
I hadn’t dared
hope for
does not feel real.
But it is.
There are no words
which can adequately describe my gratitude
This freedom doesn’t arrive quietly, it carries echoes
wondering
if quiet can be trusted
the hypervigilance
has never quite
left my body
Grief and Gratitude
hand in hand.
Without the medication,
Noah is waking up to himself
in ways I didn’t even know to hope for.
As the AED’s weaned, the fog began to lift
his personality sharper,
his curiosity louder,
his joy
fully his.
For so long, the medicine kept him safe, but
it also kept his light dimmed.
While Noah has been fighting his epilepsy battles
I have spent these years fighting mine too.
as a trustee for UKIST,
I’ve helped shape the support
I once needed.
I’ve helped build medical education
for doctors
to help them recognise infantile spasms
faster
to save families
from the long
lonely limbo
we lived through.
And now,
as Noah’s medication era ends,
so does this chapter
of advocacy.
There is healing in that symmetry
A New Year that truly feels like a turning of the page.
If you are reading this by hospital light at 3am
or drawing up meds while fireworks ring out
I see you
I was you
I am you, still
and yet, I am also here
seven years into this well travelled road,
telling you this:
there are days ahead
you cannot yet imagine.
days where fear is not the loudest voice in the room.
To the parents
entering another year
already exhausted
survival
is not the end
of your story
there are glimmers on the horizon
we will keep the light on until you get here.
