26/08/2016 07:39 BST | Updated 24/08/2017 06:12 BST

From The Heart, A Letter To My Children

A letter to my children

You amaze me everyday, each new milestone met brings joy to my heart and also a little stab of pain.

Each picture you bring home


Party invitations

Sports day


Clubs you want to join

8/10 in your class tests

Hearing you read

Watching you ride your bike, swim in the pool or just playing together.

Each moment brings me joy, but also watching Kai alone unable to join in hurts me deeply.

You try to include him, you all mother him. Give up your last bit of chocolate, push him on the swing. Show him your latest find.

I realise how hard you have had it.

You didn't ask to have this life. I know it is hard for you all. To watch your brother smash his face open during a seizure. To see ambulance men at our house and me sobbing whilst Kai is wheeled off blue lights flashing. To miss out on going to the park next to your school after school with your friends because I have to be home for Kai. To adapt to Kai's routine all day every day no matter where we are. To miss mummy for weeks on end when I am in hospital with your brother. To do an assembly and mummy can't be there as I have yet another hospital appointment with Kai. I even missed your first day at school Honey-Mae which really hurt me. To miss out on things that I would love to see. You never complain you never moan you all just accept that Kai's health comes first.

I love you all so much, no more and no less than Kai. I am proud of you all for how you accept my attention goes that bit more on Kai than it does on you.

I love how you all look out for Kai and make sure he is safe. Getting him drinks, food and calling me when he has filled his nappy.

We have so many good days and so many bad days. I know the bad days can effect you more than you care to admit. It can't be easy having a brother with such complex needs.

I know it upsets you when we go out and people stare, you get angry and sometimes ask out loud what they are looking at.

I know that not having my full attention upsets you more then you show. Being told later or let me just do this..can't be easy.

I know you can see the sadness in my eyes some days.

I know seeing your brothers injuries and operation scars upset you.

I am sorry for the tough times you have faced, the things you have witnessed that no child should ever have to see. To see mummy and daddy argue over what is best. To see mummy upset waiting for results. We try to sheild you from most of what goes on. But you aren't stupid you know.

You have asked to read my book, and I have said it is an adult book. The truth is I never want you to read it. I never want you to see how dark some points were for us. I try to do as many fun things to make good memories to outweigh the bad ones.

I know that Kai has made you all more accepting, considerate and understanding of other peoples needs. I know you will all turn out to be amazing adults, who show compassion and understanding. I don't care what you do, I am already so proud of each and every one of you.

Bailey- you are caring understanding and even with your own issues you still have a smile on your face.

Honey-Mae I see a lot of you in me, it worries me as you are the strong one. It's ok to show your feelings.

Daisy- your crazy little ways make me smile everyday. Bit deep down you are sensitive.

Lola- you already can tell Kai can't do half of what you can. Sometimes you take full advantage of this by stealing his chocolate. But you also cuddle up to him.

I am sorry that with each bit of joy you bring to me it is over shadowed by me thinking if only Kai could...

I am sorry you have had to grow up fast,

I am sorry you have missed out on so much.

But I am thankful for you all.

Bailey summed it all up for me one day in the car..

"Mummy we are so lucky to have Kai, just think some people never get to experience someone like him. We are very lucky."

With that sentence I felt my job was done, Kai has brought more joy into your life's than I could ever imagine.

Keep making me proud kids

I love you