To my dearest little boy I want you to know I see you. I see you when it feels like Luke gets more attention than you do. I see you when we don’t do the things you want to do because I know they’ll be difficult for Luke. I see you when sometimes Luke gets away with something you know you never would. I see you wonder why your brother always gets to sit on the soft seat of the buggy when his legs get tired, while you have to sit on the uncomfortable step when yours do. I see you left behind as mummy and Luke head off to appointments and meetings. I see you sacrifice time with me as I go about the things I feel I have to do to make the future better for your brother. I see that you never ever complain about these things.

And then I look to the next few years and I see you make more sacrifices. I see you missing out on more and more activities as Luke’s condition worsens and we can’t do certain things together. I see you giving up time with your friend’s so your brother won’t feel lonely. I see you push him around in his wheelchair and I see you learn how to help with stretches and get meds and how to transfer your brother from a chair to his bed so you can look out for him when he wants you and not mummy. I see you sacrifice time with me as I take Luke to more and more appointments and tend to his needs. I see you getting things for your brother. I see you stand up for him as cruel people mock him or stare or make rude remarks. I see you comfort him when he realises the full extent of Duchenne. And the hardest part of all is that I see your heartache when this disease takes Luke from us and you lose your best friend, brother and side kick. And through all of this I see you as a tower of strength, much taller than you could ever imagine and I absolutely love you for it.

But please know this… you are much more than the sum of all these things. You are not just Luke’s brother, you are Coen. You are important because you are you. I see you for the beautiful, strong and loveable little boy that you are. I see a little boy so full of kindness, a kindness rarely seen in a little boy of just 4. I see you full of fun, you’re the joker in our house and without you there the laughter would not be so intoxicating. I see your beautifully inquisitive mind and how you love to learn, I think you could teach me a thing or two. I see how much love you have in your heart and it’s contagious, you make my heart beam with love when I am near you. And when I look to your future I also see a young man that I am proud of. A young man who cares for those around him. A young man with the world at his fingertips and the drive and the will to make it his. I see you living the life you want because this life you have been given has taught you that time is precious and you only get one chance and I see you drinking in life and you make me smile. I see a man with a beautiful life of his very own filled with people who see you just like I do.

Yes Coen you are the brother of a little boy who will need all of us but please remember that is not all you are. You are Coen – the joker, the lover of life, the smart alec, the adventurer and the keeper of your mummy’s heart – I love you because you are you.