Just a sister 

“I’m just a sister” this what my daughter told Prince Harry earlier this week at the Wellchild awards when he asked her why she had won her award. 
I’m just a sister, 

NO my darling girl you are a sister but you are a whole lot more as well. You are kind, caring, compassionate, funny, and loud. You make me smile in the darkest days sometimes even without meaning to and you are one of the wisest people I know. 

Monday night was incredible it was so magical to see you treated as a princess from the red carpet to our royal dinner companion the night was exceptional.

Watching you Brodie receive the Wellchild award for most caring youngster was a moment I will cherish forever. I am so proud of you my daughter, your courage to stand up for what you believe in, to fight for others. Your endless capacity for love. 

Our night was just marvellous , Prince Harry was so lovely and genuine. Getting to meet him was wonderful, getting to sit along side him at our table was amazing . I know you were so nervous and I was so very grateful to Gaby Roslin for taking you and your sister around for photos with other celebrities. Many I didn’t recognise because in your words “I’m out of touch”. 

Wellchild certainly did their award winners and their families proud. The Dorchester was so beautiful, the celebrity guests, the food were all spectacular. We all had a memory making night. 

For me seeing you, Brodie on that stage was just amazing watching the video honouring you was priceless. Hearing you speak about missing Livvy tore at my heart. I know how thankful she was to have you as her sister, how much she loved you. 

I was so proud to see you receive your award and so blessed that you got to have a night honouring all that you do. I am so thankful for you dear girl, for your Brodie nights, for your cups of teas and your cuddles. Yet I am most grateful for your heart, so open, kind and loving. Never change sweet girl you make my world a brighter place.

Thank you Wellchild for seeing what I see in my daughter. Thank you for a memory making evening but most of all thank you for working so hard for families with severely disabled children like mine and for making us feel less alone. 

How can I stop their pain ?

Yesterday I had a bad day.

That’s sounds a little of a understatement as I was rushed into hospital by ambulance struggling to breathe.

After some oxygen and painkillers and a few tests later I was diagnosed with pleurisy and told to have complete rest and plenty of fluids.

Anyway the reason I’m sharing this isn’t for sympathy, though willing to accept that as well but because of what happened with my youngest daughter.

Brodie had been out swimming with her friends when I started to struggle and returned home only to find her mom being taken into an ambulance.

Don’t get me wrong this must be frightening to any child but take in mind the last time Brodie saw Livvy she was being taken away in a one too.

The poor child broke there and then. She fell to the floor in hysterics my heart was breaking for her and after refusing to leave and my explanation the lovely ambulance ladies allowed her onboard to see that I was ok which reassured her a little. Oxygen masks aren’t that reassuring it seems.

It pains me so much that my children have memories like this and even though we focus so much on the blessing Livvy was to our lives. There in the back of their minds they have these traumatic memories.

I know people say time is a great healer but when the worst has happened to you it’s not easy not to go back there again.

I know she didn’t stop worrying until I returned home and today I have also found her watching videos of Livvy.

I hate that I had to lose my daughter but watching my daughters grieve for their sister hurts all over again.

How can I stop their pain?


This was taken the night before we lost our beautiful girl.
The last photo of Brodie and Livvy together.

Too young to have faced so much.

My girls have had to face so much in their short lives that it sometimes leaves me angry at the cruelty of life. They have had to grow and face pain that is beyond their years.

This pain has left scars. It’s took pieces of their hearts away and left them with worries others have never considered.

Saturday my two older girls went out on a bike ride and my eldest Kennedy went over her handle bars and landed in the road with a right thump.

Thankfully besides from being shook up, grazed and bruised she was ok, but for my second eldest Eden it was a different matter. She literally fell apart.

These two teens argue like cat and dog but Eden tells me that when Kennedy hit the ground “she couldn’t breathe for fear”. Even when she realised Kennedy was ok she couldn’t let go of the nightmare she was imagining, losing another sister.

Kennedy told me that sore and battered she had to calm Eden down. Eden was sobbing, heartbroken with fear.

I hate that a bike accident can scare my daughter so much. That she has faced the horror of loss twice that she is so aware, so scared,and expecting it again.

How many thirteen years fear the loss of a sibling. How many are woken with nightmares of her sister always out of her reach.

How many dream of cures and miracles so others don’t feel their pain.

Life isn’t fair, I hate the loss of my girls innocence.

I want their only worries to be of prom dresses and make up.

Yet we can’t turn back time. Kennedy’s accident was just a reminder that life is unpredictable and the only thing we can do is embrace it, live it and love.

Make the most of today is our motto. I just wish my girls hadn’t had to learn this the hard way.




What do you say???

What do you say to a little girl who doesn’t want her tenth birthday to come?

It isn’t right, she should be full of excitement as she enters double figures. Yet all she can think of is that her big sister didn’t live to ten.

Her head is full of questions she is struggling to answer. To be honest I have no answers.

Will Livvy still be my big sister when I’m ten?

Why didn’t Livvy get to ten?

I tell her of heavenly birthday parties with as much cake as you could ever imagine. I remind her of Livvy’s freedom of the awful evilness of Rett syndrome, how her heavenly birthdays are free from seizures and pain.

Comfort is little for a little girl who misses her big sister so much. Talking about her today she told that me that sometimes it hurts to breathe, hurts to remember. How I know those feelings!

Yet I don’t want them for my nearly ten year old. I want the only thing to be worrying her about her birthday is what outfit to wear.

Part of me wishes I could take her away, throw her a big party but the reality of life and bills to pay don’t allow me to do this.

I just have to pray that my hugs, my love will be enough to make a hard day the special day it should be.