Star gazing

When I was a little girl my mum and I would sit on the swing seat in the garden, look at the stars and sing "Would you like to swing on a star" together which is something I always enjoyed so much I would dream of doing with my own daughter if I ever had one which, of course, thanks to the grace of God I did!

So this one is for my mum and Amelia-Rose...

Star gazing

Splashes of silver
Spray across the sky
And fade into non existence.
We'll talk of adventures
As the stars dance above us
And a blanket of darkness surrounds us
And in this moment


I have never felt so loved,
Nor loved as much as I do now, 

Your breath swirls into mist
Your spoken words are frozen onto my heart
And with our hands entwined
I'll plead to the universe 

"Please never let us part"

But you have growing to do, 
And I'm your mother, 
Here to nurture, 
Not to smother, 

So just for now, 
For this moment, 
In this place, 
As the air tickles our skin, 
And the night pulls us in, 

The bats play above us, 
And the world spins on in spite of us, 

Lets
      Just 
            Love 



Happy 2017 everyone! I hope and pray you have a truly blessed year! 

For the lost boys.

I must admit this last year has been really really hard and I've been terrible at actually being honest about how lonely, isolated and terrified I have been. My faith in God, that this isn't how it's meant to be, that I will endure any suffering thrown my way because I have been blessed against all the odds with the most beautiful daughter who I never thought I would have is what has got me through and I have prayed 'my prayer', which goes a little something like this, many many many times

Lord use me as a vessel of your light, shine through me my Lord, my God, let the words that come to me be your words, my voice is your voice, whatever happens Lord, I believe in you"

The way I have emotionally and mentally made it through the year is to write poetry but I've not wanted to share those words because I am a scardy-cat and have been  too afraid what people will think of it but I am determined that 2017 is going to be OUR year, 2016 is almost behind us and a new year, a new beginning and a new life lay before us and I am so freaking excited! I believe it can only get better.

In trying to find courage I have sworn I will grow a pair and share my poetry on my blog. Poetry I hope in 2017 will become songs!  I don't believe they are my words, I am just blessed that they came to me when they did. 

Today I'd like to share a poem I wrote for all the lost souls, all the babies we loved but never got to hold. All those lives we loved so much and still do but don't get to see. When I say 'we' I mean women everywhere, not Tony and I! Although we are included in the 'we' I don't just mean the 2 of us. 


Take a breath, pause a moment, 
Blow the seeds of the dandelion, 
Towards the light of the stars, 
Where your tears are felt, 
And your cries are heard, 
Where your baby sleeps in peace, 

His eyes are in the stars, 
His hands hold the daises, 
His shadow is on the sun, 
He is gone but never forgotten, 
We knew him not at all, 
But you cradled him in peace and calm, 
So, in motherhood stand tall, 

The sun rises and the sunsets
It shows the colour of his laugh, 
He grows everyday in you, 
Carry him along the path. 
And never let that love go, 
Only you could know
How much it hurts
To love a soul
You'll never get to hold. 

Heaven is a beautiful place, 
Waiting for the human race, 
It's ok to let it go, 
A soul finds peace in heaven we know, 
Never feel ashamed, 
To speak his name, 
Shout it loud, 
Stand tall and proud. 



Until tomorrow, I hope if you're reading this you have a peaceful night, if you live with pain I pray your spirit can endure it and it won't break you down. You are so much stronger then you think you are! 

I wrote this on the 15th December but I think now is the time to share it. My husband is many wonderful things but he is not a question mark! 

On Sunday we went to the garden centre to see the beautiful displays, meet Father Christmas and most exciting to me was meeting another EDS lady Gemma. Who is just totally wonderful. We had a really good time, the pain got a bit crazy but being with Tony and Amelia-Rose did the great job of being a reason to ‘put on a brave face’ I know I don’t have to with them but it’s good, it gives you something to concentrate on rather then the pain. When we got home  there was a Christmas Card. What a delight! Our first hand delivered card of the season! Then I hear a scoff and “Well that’s charming isn’t it’” from Tony “What?” I ask and he hands me the card… To Chloe Amelia-Rose and ?” It was kind of these people to send a card and I think building each other up instead of tearing each other down and so I thank them for their Christmas cheer but ? ? Surely Chloe and family To a couple & Amelia-Rose From us to you but ?

My husband is not a ? He is my comedian who can make me laugh 5 minutes before I’m due to go down for a fairly big operation, he makes me laugh on the bleakest most frustrating hardest days he makes me laugh when a joint is subluxed and I really am in agony. Don’t ask me how he just does.

He is my taxi driver who drives me to my various Dr and hospital appointments. Back in February when I was in hospital an hour away (if the traffic was good) for a month He would drive to me, spend the day with me helping me wash, talking, reading, laughing, trying to concentrate on the amazing out pouring of love from people who wrote so many get well cards. Then he would drive the hour home have a quick turn around from school then drive BACK to the hospital and eventually after the evening visit off he would go again to do it all over again the next day. For 30 days. 

But why? That seems excessive, was all that travelling really worth it? The simple answer is yes, yes it absolutely is because he is a Father too. The dash back in an hour to almost just turn around again was to ensure I saw my daughter everyday. He is phenomenal with Amelia-Rosea and the noise of them playing and laughing does quite literally warm my heart.

He’s like a journalist writing a auto biography about my life as he sits next to me and takes mental notes, sometimes written notes on what going on, where we are and where we are headed.

He is my guide, telling me which way is up when you’re so tossed around and tumbled up so up looks down, down looks up, left is right and right is left. When I stand up to transfer his are the hands that wrap around me as we cuddle for a moment and his is the voice that tells me “I’ve got you”

He is my alarm clock, if I’ve slept and I’m not awake first he is the person who kindly and gently wakes me up and already has my morning medication ready to take.

He’s my council and my comforter, there are times when life feels overwhelming, we all have them and he’s always there.

He is both my personal assistant and my security guard. Trying to make coffee dates for me with my friends if he sees them when nobody’s text to ask if I would like to go out or called round for a cuppa for a while but also knowing how to politely move us along if we’re out towards the end of the outing and he knows I just need to get home!

He is the cleaner, washer maid and chef, delivery service, cheer leader and lover,  he is my knight in shining armour suprising me with flowers and telling me his song “for us”  is ED Sheeren’s thinking out loud because the 1^st two lines “When your legs don’t work like they use to before and I can’t sweep you off of your feet”

My husband is my fulltime carer and like many people who care full time for a loved one he wears many different hats and I could not be more grateful and I remind myself to make sure he knows that. My husband is many things but one thing he is not is a question mark.

Oh my goodness I am sorry it's been so long!

Hello friends! I wrote this about a month ago and things have changed a lot again since then but I didn't post this at the time and as it's part of our journey I am going to post it now.

I am so sorry I haven't written for so long. Please do click on the youtube link to bring you up to date. If you do all will become clear as to why I have been quiet for so long! https://youtu.be/M2iLz1_WhaQ

For this entry I am going to write about where we are now as appose to what got us here because I'm not sure how long I will be able to keep this up for! I have a cannula right in the bend of my elbow which I have to try to keep straight because my veins are terrible at the moment, we had to try in my  right arm and feet today (the cannula in my left arm blew over night so I've got a fabulous bruise!) before we had to settle on the crook of the elbow in my right arm, I am going to be hooked up to some more fluids tomorrow so if I can keep the vein from blowing by not bending my arm too much that's just what I have to do!

Today was the first day that I got to wake up at home, go into hospital to be hydrated and come home again. It was so much better then staying in over night. I know when I have the op I have no choice about coming home at night and I want to keep my hospital stays to an absolute minimum in the lead up to the surgery. I didn't really have a choice Thursday night and poor Amelia-Rose cried herself to sleep which of course had me in tears when I found out!

I will fully admit the getting there and getting back is horrendous, we don't have a wheelchair upstairs because mine is too heavy and huge to get up the stairs safely but it means Tony is having to carry me from the top of the stairs to the bedroom and although he just picks me up fairly easily *considering I am the tallest* but things like that are those silly things that get to me because he isn't lifting me because we are messing around he is doing it because he HAS to and that suddenly makes me feel a bit erm, at a loss with my dignity.

I would say to my fellow sufferer "Dignity is never taken away from you when someone is acting out of love" and yet I am human and therefore do not always practise what I preach when my own securities and self doubts whisper in my ear.  I'm working on it. At least I am aware that it happens and can acknowledge it is something I need to work on.

This is as far as I got with this post but like I say I think it's important to post these drafts because it's all part of our journey.