A little known fact about me is that I’m a secret rock fan! It’s often the start of many hours of banter from Phil when a song comes on the radio and I start singing along (not only due to my very poor singing) but because we have such different music tastes. We are so unbelievably alike in so many ways until it comes to music.

I was driving to pick the children up from school today when a Guns n Roses song came on the radio, I turned the radio up high as I started to sing along.

The power of a song is unmeasurable, as I was driving along tears started to fall down my face. It was as if this song, written many many years before Livvy was born, was actually written about her;

She’s got a smile that it seems to me
Reminds me of childhood memories
Where everything
Was as fresh as the bright blue sky

Now and then when I see her face
She takes me away to that special place
And if I stared too long
I’d probably break down and cry

Sweet child o’ mine
Sweet love of mine

She’s got eyes of the bluest skies
As if they thought of rain
I’d hate to look into those eyes
And see an ounce of pain

Her hair reminds me of a warm safe place
Where as a child I’d hide
And pray for the thunder and the rain
To quietly pass me by

Sweet child o’ mine
Sweet love of mine

Where do we go?
Where do we go now?
Where do we go?
Sweet child o’ mine

Did Axl Rose have any idea how poignant his words would be almost 30 years after writing them, to a girl with the biggest smile anyone could imagine, that hides the pain and fright of living with XP. She has memories of before, before protection, we sometimes talk about them, the most perfect childhood memories, playing in the sun under the bright blue sky.

As her mummy I have to put on a ‘brave face’ and be there to keep the wheels turning but I know if I stop and stare for too long then I would definitely break down and cry.

I have brown eyes and Phil has blue, you would imagine that both our children would have brown eyes, being the dominant gene, but you can never second guess genes, as we know only too well. Both Eddie and Livvy have the bluest of blue eyes. And if you look into those eyes you can see the pain that they hide, the maturity that they harbour in a soul too young to understand.

Every word of this song sums up my feelings, I’m sure Axl Rose never intended for it to strike such emotion and if he did, never for the reason they do for me.

When I got home I played the song again and listened to the words, like a secret message from lands far away, this time no tears flowed just smiles as I turned it up loud and watched Livvy start spinning round and round, like only a child can when music starts playing.

Mr Axl Rose, thank you for bringing a smile to my face after a week of uncertainty. Thank you for writing words that conjure up images that fill me with pain and happiness in equal measures.

I don’t know where our XP journey will take us or how many more hills we will have to climb but I do know that I will pray for the thunder and the rain to quietly pass us by. I can deal with XP and I can deal with skin cancer but sometimes just sometimes I wish it were me, and not my sweet child o mine.