Dylan – A Poem

At the 20 week scan and right from the start
They noticed something was different about your heart
They also told me you were a boy, I was happy & sad
I wanted to know the future about my little lad

At 27 weeks you’d stopped growing on ‘the line’
At this crucial time I needed to know you’d be fine
At 36 1/2 weeks you arrived in this land
So perfect, so gorgeous, tiny toes, tiny hands

You didn’t eat much, an ounce or max two
We thought this was normal for our little boy blue
Then came the reflux, though we were unaware
The pain it could cause, the upset and the scare

From that day ‘til this it’s affected your sleep
Not one full night to date but in hope we keep
At 8 weeks to the day, I remember it well
These episodes started, something was wrong I could tell

We rushed you to A&E, thinking the worst & unsure
They prodded you with needles, tests and loads more
After 6 days in Harlow when no more could be done
Blue flashing lights to Cambridge alone was not fun

Neurologist and consultants all got together
These brain scans seemed to go on forever
The tests inconclusive no results were found
So we were sent home still deafened by the beeping sounds

Dylan’s 1st Christmas, his screaming truly not pleasant or fun
For he was in pain, unknown to us what could be done

On January 17th our lives changed, let me tell you
For Dylan stopped breathing, he was still, stiff and blue

I was with my dad, we screamed and cried
So worried that my beautiful baby boy had died
The ambulance came as quick as a shot
They took him to resus and laid him in a cot

I remember the look on my husband’s face
As they put Dylan on monitors and listened to his trace
But once again, tests inconclusive no results to be had
He was smiling and happy my little lad

Next came the problem of Dylan’s poor knee
Swollen and hot and not working properly
So on the 5th of Feb to hospital we go
Thinking nothing really of it but little did we know

The longest 24 hours in either of our lives
When they said the word GOSH it felt like I’d been cut with a knife

More blue flashing lights through London at night
What was happening to my baby, this was such a fright

We arrive at 4am, the hospital was ghostly
I was numb I was cold but just scared mostly

The walk to the ward felt like it went on forever
The doctors arrived they all looked so clever
They said they would prep him for theatre soon
I looked outside I could see the moon

But wait another doctor decided they were wrong
No need to operate, I could break out in song
As I sit and put this down in black and white
I feel the exact pain I felt on that night

Before we knew it we were transferred to Sky
A pleasant ward, the doctor a really nice guy
We soon found out no one knew what was the cure
For our baby boy who is so innocent and pure

So they pulled him around like a piece of meat
Hoping that one day he would be able to stand on his feet
The crash team were called more times than I can recall
The drips and the drains, I could hardly stand tall

The moment I remember that haunts me to date
He was too ill for theatre; my heart broke for my little mate
The thing about Dylan is, for life his complete fight
He is the strongest boy I know; he uses all of his might

Fast forward 3 years, and just look at him now
So cheeky, so naughty and determined just WOW!
But daily life isn’t easy, it is a struggle
Meds, injections, Physio, sometimes we want to hide and snuggle

But strong we stand together to get through each day
We don’t let the constant appointments stand in our way
It’s harder than most, but rewarding much more
Just watching our little boy crawl across the floor

Defying these doctors in every way
Please God Dylan you will walk one day
We’d love you to talk too, one step at a time
I am so lucky, that Dylan you are mine

So at 3 and a half still undiagnosed
Why he’s got what he’s got nobody knows
He’s one in a billion that we know for sure
But sometimes I wish there was just one more

An answer could come from two of the same
He’s on loads of studies; it’s just a waiting game
With no answers what will the future bring?
In my heart I know it won’t change a thing

We joined SWAN, syndromes without a name
To know you’re not alone, although such a shame
That other children are poorly as well
But being part of a support group is really quite swell

Dylan is Dylan and we love him to bits

Even with all his ailments, meds, the therapists and fits
In our eyes he is perfect, special and true
Dylan Jake Myers this one’s for you

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