Tap, Tap, Tap, goes my foot on the floor.

Tap, Tap, Tap, goes my foot on the floor,

I'm still looking for reasons,

Still analyzing some more,

Still wondering what happened,

In the days that have passed,

caught in the whirlwind, all happened so fast.

I think of the people,

who all came and went,

some stayed alongside us, for some comfort all spent

I think of my life how it was just last year,

I lived with by bump, and with Jim and with fear,

and the realisation that some folk just stayed clear

I didn't think badly of those folk back then,

the didn't know what to say, bad scans AGAIN

they struggled to find the right words just for us,

thought silence was better, don't make a fuss

But we knew something was wrong right from the start

repeat scans on his vessels, bad news for his heart,

we knew he had downs, deep down we did,

but some people avoided this subject, they hid

To us it didn't matter, he was still our child,

we were lucky to have him, prayed it was mild,

not for our benefit, but to save him a fight,

the more problems he faced, the harder his plight.

That day when they told me I would soon give birth,

I prayed and I prayed for all of my worth,

I just wanted my son to be strong and to fight,

to face every challenge with all of his might.

And he did more than was ever asked out of him,

we got his downs diagnosis, it wasn't so grim,

being early was the main issue you know,

but against all the odds, he continued to grow.

We were so hopeful, we were so proud,

we restricted the visitors, only close folk allowed.

Some of those people have still stuck around,

but others departed. Some new friends I've found.

I can't believe how much my life has changed,

through all that I've lost, all the good friends I've gained.

Those people who left, and drifted away,

They ran out of words. Now I've nothing to say.

Mummy has been sitting here thinking bubba, thinking about how everything used to be, thinking about who was in Mummy and Daddy's lives, thinking who was there, really there, to support us when we thought we might lose you in my tummy.  That then got me thinking about who was there when we thought we might lose you after you were born 10 weeks early.  That progressed to me thinking about who was there for you at the end, when your struggle was so bad.

Some of those people still don't have much to say to Mummy and Daddy, Haydon.  We can't make them want to talk, and we won't force it.  Some people tell Mummy and Daddy that these people just don't know what to say.....what? 6 months on and they still don't have any words, at all? I find that hard to understand....an offer of a hug on a really dark day isn't words...

They all continue to live their lives Haydon and we don't seem to be part of those worlds anymore, or included in those worlds anymore.  I know that I would much rather be surrounded by friends who do go that extra mile, do try to walk in our shoes even if just for a second.  The rest, well......as much as it hurts....sometimes the gaps just get too big to fix.

I miss you so much today Bubba.  We are getting closer and closer to you having been away for 6 months.  I don't want you to have been away for half a year.  Daddy misses you too.  We both cry for you a lot still baby boy, we miss everything about you, even the wires and the tubes and the monitors and nurses...and we never ever thought we would miss all that stuff, but that stuff meant you were still with us.  I want to be able to go back in time.  I want to change the fact that you are gone, I want to make Mummy and Daddy's hearts unbroken again.  The only thing I wouldn't change is the lesson we learned, who is there, who cares, who tries, and who helps us to get back up on our feet.  That was a valuable lesson, but it's a pity we had to learn it.

I miss you bubba boy, so does Daddy.  Thank you for giving Daddy sunshine for his postman job yesterday xxxx We will love you forever, because we just do.  Catch my big cuddle, cos I'm closing my eyes and hugging you with all my heart xxxx <3