Triumph For Tomas

18/05/2025

Being a medical parent demands relentless energy, emotional strength and unwavering commitment.

But it also comes with a kind of exhaustion that many people don’t fully understand.

The kind of tired that no amount of sleep could ever fix.

We give every ounce of ourselves. 24/7 - 7 days a week. No holidays. No days off.

The mental load of constant medical decisions, appointments and advocacy. The physical exhaustion of sleep deprivation, lifting, assisting and always being “on”. The emotional fatigue of holding space for your child’s needs, managing your own feelings and navigating the isolation that can come with this journey.

It’s okay to acknowledge how hard this is.

How this exhaustion is something that you feel deep within your bones.

It doesn’t mean you love any less.
It doesn’t mean you care any less.

It means you are human.

You deserve rest, support and moments to refill your own cup.

If no one has reminded you today: you are doing an incredible job, even when it feels impossible.

To all the medical parents – your strength is immeasurable, but you shouldn’t have to be strong alone.

You are seen, you are valued and you are never alone in this.

04/04/2025

To the Parent of a Medically Complex Child

You live in a world most people can’t imagine.
Where milestones look different.
Where schedules revolve around specialists, therapies, and appointments.
Where joy is measured in progress charts and quiet victories—ones the world might miss, but you never will.

You’ve learned how to speak medical language like it’s your second tongue.
You’ve stayed awake in hospital chairs, memorized medication dosages, and fought battles no parent should ever have to fight.

And you do it all with love.
With strength.
With a kind of bravery that doesn’t shout, but shows up—every single day.

It’s not the parenting journey you pictured.
And some days it’s lonely.
Because while others celebrate first steps and soccer goals,
you’re celebrating the moment they made it through the day without pain.

And sometimes you grieve.
Not because you love your child any less—
but because your life became one you never prepared for.

But you are not alone.

There’s a quiet army of parents just like you—
carrying clipboards and heartache.
Smiling through exhaustion.
Loving their babies harder than anyone could ever understand.

You are doing sacred work.

And your child?
They are not broken.
They are strong.
They are beautiful.
They are deeply, fiercely loved.

Because they have you.

09/09/2024

Tomas is back in the news this week, unfortunately due to the failings of our local council refusing to fund his new walker. Something he needs and loves.

We are so thankful to friends, family and the people in our local community for supporting him in his sponsored walk and raising all the money he needs for his walker

Triumph for Tomas has decided to start helping to fund equipment for children who have been refused by their local authority. As things shouldn't be so difficult

Parents of a boy with special needs say he has been denied essential equipment because the council refuses to believe them.

08/03/2024

31/01/2024

News of the passing of a PMD warrior is always very difficult. Taken so young and without warning
Sending lots of love to his family from all of us here

18/05/2023

Why is this even legal in 2023....
As if having a severely disabled child doesn't make life difficult as it is but you have holiday companies charging extortionately inflated prices for a wheelchair accessible transfer from airport to hotel.
loveholidays charging £79.49 per person more for a wheelchair accessible vehicle
On The Beach Holidays charging nearly £30 per person more then a standard private transfer
easyJet, Jet2.com & Jet2holidays and TUI don't offer wheelchair accessible vehicle options on their website. I do know Tui offer wheelchair accessible vehicles country dependent, as they offered us one for Tunisia, then changed their mind a few months before and then tried to charge us £110 for a mini bus Instead. So other countries they will probably have an option available

How is this even happening in this day and age.... enough is enough of the discrimination!

Why should a family of 4 Have to pay £318 more for a holiday compared to someone who is physically able

10/05/2023

To the mom who didn’t get “just a healthy one”:

A healthy baby .
That’s what you want.

Boy or girl? Doesn’t matter.
Just a healthy one.

With ten perfect fingers and ten perfect toes.
A tiny smile and button nose.

A brain that works as mine and yours.
Tests coming back with perfect scores.

A heart that beats strong—the rhythm of drums.
And the in and out breath of healthy lungs.

But then you find out it won’t be so.
An unhealthy child— so much unknown.

A journey full of winding roads.
Ups and downs. Such highs and lows.

A little one fighting for their life—
And you, strong beside them in perfect stride.

Just pushing them forward with all that you are— a mother who hasn’t backed down thus far.

This motherhood it will indeed be hard.
The heartbreak will leave inevitable scars.

Not a motherhood you had ever planned for—
But it won’t be less. It will be more.

More love needed and more to give.
An understanding compassion that is so so big.

More strength than you had ever known.
A faith in God and Him alone.

You’ll learn to hope beyond all reason.
And lay down burdens in every season.

You’ll fight and give up and fight some more.
You won’t be stopped by seemingly closed doors.

You’ll give more than you knew you could.
And though you’ll grow weary you’ll still see the good.

Yes this child— unhealthy as they may be.
This child has allowed you so much to see.

Joy and beauty.
Pain and sorrow.
A gratitude for every single tomorrow.

This child is adored— a gift from above.
A newfound passion full of motherhood love.

So this is to the mother of an unhealthy child.
Who holds up her head, moves forward and smiles.

Your motherhood was not the way that you planned.
But today you love more— and stronger you stand.

Author Unknown

And I'd do it all over again!

10/05/2023

3.42 miles added to my Demelza Miles in May clock today
Scenic route in to town, stroll around the Rec, even popped into a Demelza Hospice Care For Children shop for a browse

https://givepenny.com/emmapowell_miles_in_may

Check out my activity on Strava.

06/05/2023

Tomas was hooked on the Coronation today
And loved being crowned King at home lol