It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Thursday, 31 December 2009

Poem; My Life Yet To Come by David Moore - Fellow Heart Parent

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

Happy Christmas & New Year!

It was eventful (it wouldn't be Ethan if it wasn't!) We had our lunch at the Brown Horse at Tow Law (Durham - it was divine!) and we were stopping over.

On Tuesday I took Ethan to the gp as the last well over 4 weeks we have noticed his breathing is very quick - over 40resps he is working harder eg his shoulders are moving up and down alot and his tug is worsened. He heart seems to be doing 10 to the dozen He saw dr leonard for a check a couple of weeks ago and she said his chest was clear although noted his resps etc were up.

He has had constant temperatures which we are attempting to keep down with calpol, a cough, runny nose (gp said fruity cough and rattly chest lol) but his chest is clear?... he is grey and sometimes navy. He is now off his food and intermittant diorhea. Generally he is up and down, knackered one min perked up the next.

That morning, he had no energy, we were holding his head up etc... he refused breakfast, but had a little dry cereal in the end - then perked up by 10am! He has given us some amoxicilin to start if he gets any worse

I think its probably as he had his s.flu jab on 13/11/09 he was alright for a week or so then started with all this.

SOooooooooo, he had been GREAT on Christmas day, eaten loads absolutely fine no problems at all - no reason to be concerned anyway. Ethan was sleeping and we were in our room, when he started grunting in his cot. I picked him up and he was navy started being really jerky but rigid legs etc... floppy not happy at all. So I rung 999. It took an age for them to arrive - but we were in the middle of nowhere and it was snowing ALOT!

Ambulance drive from tow law took half an hour and was awful in the snow and think we knew more than they did they looked very young! he wouldnt let them touch him was histerical...coughing up frothy stuff, but at least he was responsive! Within half an hour of being in and having a little 02 he was ten times better... very very strange.

We are home we came out at 1am as he was much better didnt see the point in stopping in and wouldnt have got any sleep. They can see changes in his lungs and a small amount of consilidation but dont think its pnemonia, gave us some AB's . Didnt sleep as typically, as soon as he was asleep in his cot again - he started grunting?! so pulled him in with us where he was more upright and he seemed more settled.

Drive back to Tow Law very hairy in bleaching snow... I hope we aren't in for a replay tonight though as he is still poorly and we had to ring for another weeks antibiotics.

SO I just wanted to wish everyone a very Merry Christmas and all the health and happiness for the New Year - lets hope this year is a good one.

Oh and btw we are still waiting to see the surgeon about his next surgery but should get a date soon xxx love to everyone x