How is it October already ?

I have been reflecting about this last year and cannot actually get my head around what an incredible year 2016 has been so far. Of course the highlight has to be the decision to adopt my little one he has brought such a light into my life I cannot find the words to convey what a gift he has been. My friend described me as “radiating joy” the other day and I think she may be right I am so happy and so content at having another in my heart. Being back at toddler stage is very different now than it was ten years ago but I am loving every minute of it. I mean just the wide range of clothes out there now is enough to send your head into a spin. 

Yet besides this major change in my life I have seriously took this year by the horns and literally made the most of every second. I know this because right now my body may ache with exhaustion (whoops). 

I have stepped out my comfort zone in so many ways. Learning and participating in politics, attending and speaking at the Labour conference and getting involved in the local campaigns has been brain aching but also so fulfilling. I am actually scaring myself with how much I really enjoy this arena and the people I have gotten to meet and I am excited to learn and develop more.

I have also completed my degree and actually graduate this week, how exciting is this a childhood dream finally coming true. 

Still I think my real steps forward have been in friendship. Over the last few months I have said yes to invitations. Said yes to group meals, coffee mornings and lunch dates. A dear friend of mine told me that “I was scared of friendship” and she was so right I wrote here often about my desire for deeper truer friendships but the truth was I was hiding. Pulling away from any situation that required me to be open and vulnerable but her call out challenged me to say yes to being vulnerable and exposed and I’m loving every minute of it. I’m still a work in progress but honestly I am so grateful for those that haven’t given up on me. 

2016 has been an emotional rollercoaster I have laughed and I have cried and it’s only October but to describe 2016 I would simply have to say “it’s the year I began to live fully’. No more holding back, I’m loving life right now and yes it isn’t easy at times but isn’t that what makes it more worthwhile. The achievements, the moments.

I cannot believe Christmas is only a few months away, this year does seem to have flown by. Yet I am happy to hold on to 2016 a little longer it’s been a very special year.  

It’s October 

October is Rett Syndrome awareness month and normally each year I am sharing here and everywhere as much information as possible to raise the awareness on this syndrome. 

This year I have struggled.

Not because it isn’t as important anymore because it definitely is, but because I am angry.

I’m so angry that Rett Syndrome is still taking children from their parents. 

That Mother’s, fathers ,sisters, brothers grandparents are broken hearted.


I’m angry that my friends have to go to sleep each day just praying that their child will awake in the morning.

I’m furious that so many are in hospitals fighting infections, seizures, recovering from seizures. Families separated, families struggling. 

I’m frustrated that no matter how far the research is coming Charities are still being the ones to fight for funding to save our girls. That government funding is few and far between. 

It’s another year, another October and we had lost another. 

Another too many

Another too soon 

Another heart broken.

So yes October is Rett Syndrome awareness month but for those fighting against this syndrome October is another month in a year full of battles, heartache and fear.

I’m so angry at Rett Syndrome. 

We need a cure and we need it now. 

Behind the smile.

I sat there watching the video on the big screen, aware that people were looking towards me waiting for my reaction. Would I tear up, would I be smiling, how proud would I be?  My heart was  pounding deep inside my chest, I could actually hear it in my ears as if it was echoing on my chest .

I had to smile, I had to pretend.

Yes I was so proud, so excited for my baby girl but I was also so angry that life was this way.

You see I had done what I thought I should of,

Ok I never expected to have a child with a severe disability, it had never crossed my mind, in my wildest dreams I would have never have considered it. But I owned it, I learned all that I could, I embraced my new life, tried to be positive, to live with purpose, to make the magic in the moments.

But it still wasn’t enough

And that, well that makes me angry.

I didn’t mind caring for Livvy, I never stressed over the endless hospital visits or the lack of sleep. I embraced it, because that was what she needed, what I needed to do to love on my daughter. I did it,

I learned to love the life I didn’t choose. 

But it wasn’t enough.

Life just doesn’t play fair, it doesn’t matter how many times you roll with the punches, accept the destination changes, breathe in deep the new life.

Sometimes the rug just gets pulled out from under your feet. 

Your world just crumbles.

So yes whilst I was so proud of Brodie and her award, sitting there listening to her talk about losing Livvy didn’t make me sad it just made me angry.

I was angry that she had to lose her sister,

Furious that she had to feel so much pain

and

Crazy that I had to bury my daughter.

Time doesn’t make losing a child easier, I can tell you right now almost 8 years can sometimes feel like almost 8 days.

It hurts,

It’s that moment of repeated realisation that she is never coming back,

That I won’t hold her again.

Its a symphony of emotions that I still have to learn to play.

Anger, sadness, missing, love, joy, gratefulness and hope.

But I will continue to practice my notes, trying and trying again.

Because although pain, anger may play a big part of this production called life, the greatest character, the biggest influence will always be love.

And love is always enough to create the greatest of masterpieces. 

 

Let’s talk about the dress.

It has been little over a week since our magical evening and I think I may be finally coming back down to earth. It was an incredible evening and I don’t think I will ever get used to saying, ” I met a Prince”.

It was a truly wonderful time made even better by how fabulous I felt in my beautiful dress.

my dress

 

Now before I tell you about this stunning dress I do want to say a massive THANK YOU to Navabi  who gifted me a dress to wear for this evening. They asked for nothing in return, no blog post, no social media nothing, their only request was that I had an amazing time.

Yet although they didn’t ask I  do so want to tell you all about this beautiful dress.

Its a sequinned evening dress made by Ariella and you can find it here. It made me feel so incredible and I received  so many compliments throughout the night about it I’m sure I was blushing. The design just fitted my body perfectly giving me definition. The look is just so elegant and timeless. I am already planning to wear it for the Livvy’s Smile Ball I am hosting next year (don’t forget your tickets).

The dress is simply stunning and whilst I may not have come home with a Prince I did feel like a Princess for a night.

Anyway who needs a Prince when I had this handsome chap with me, I love this man and this November we celebrate 20 years of marriage woo hoo.

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Again I have to again extend my gratitude to Navabi for their kindness, I look back at the photos from the evening and can just seen how amazing I felt and looked.

It truly is one special dress.

 

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Rainbow style 

Sometimes when you are struggling or life seems dark it’s good to remember that without the rain there would be no rainbow. 

This is why I was so excited to dress my little one in this gorgeous rainbow leggings from Blade and Rose


This little one has certainly brought a lot of light into my life. He is such a gift. 


I’m having so much fun being a mom to a little one again and I’m so excited by the vast array of stylish, funky clothes out there. 

I’m loving the autumn winter collection from Blade and Rose I literally love so much from the hoodies to hats. 

These are on my wish list for little one. 


* I was gifted this leggings for the purpose of this review but all opinions are my own. 

#MamiaDaysOut Challenge

The last few weeks have been crazy from the Labour conference to the Child Growth foundation conference to attending the Well-child awards I truly don’t feel like my feet have touched the floor. I ache everywhere and I am feeling so guilty for the things I think I am missing.

One thing I don’t have to feel guilty for though is the weaning of my new little one. Thanks to a fantastic hamper from Aldi’s for taking part in their #MamiaDaysOut I know my little one has been eating healthy organic food.

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Now don’t get me wrong weaning has been far from easy we have issues with swallowing and feeding in general but this range from Aldi’s has been a massive hit. He especially loves the juice and for a child who struggles to drink at times those juices have been guzzled down in minutes.

#MamiaDaysOut

 

He loved most of the tastes he tried

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But his overall favourite was these

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I am so thankful for such easy, healthy, tasty food that is available for my little one. The convenience of Aldi Mamia’s 100% organic baby food range means I have been able to feed him well whilst travelling etc.

 

 

I have been using Aldi’s Mamia’s nappies and wipes for while now, so finding out about this baby food range is an extra bonus. In fact I have already been back in store for more supplies. 

 This post is an entry for BritMums #MamiaDaysOut Linky Challenge, sponsored by Aldi Mamia. < aldi.co.uk

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.