‘I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be’ (Robert Munsch)
This is one of my favourite books to read to my boys, and it was the one Luke chose to read last night and the timing could not be more relevant.
Tomorrow, that crazy little boy I’ll love forever and Like for always, the one that made all my dreams come true when he made me a mum, will celebrate his birthday. I just can’t quite believe that it’s been 5 years since I first cradled that little 9lb 1oz bundle of love in my arms. Since my heart completely and totally belonged to the little boy who would grow to call me his mummy.
I think for most mums, birthdays bring a melting pot of emotions, they are happy and proud of their growing children but realise that childhood is short, and soon, their little ones will be all grown up. But when your child is life limited, birthdays become so much more significant and seem to come around much too quickly with each passing year. Luke has had 5 years of muscles wasting, 5 years waiting for a treatment. He’s more than half way to the age that most boys with Duchenne become wholly dependent on wheelchairs, he’s 5 years closer to needing 24 hour ventilation just to keep him alive, 5 years closer to not being able to lift his arms to hug me, and 5 years closer to the inevitable end that Duchenne always brings.
But he is just like any other little 5 year old excitedly waiting for his big day. In his pure and perfect innocence Luke, my little sugar monkey, says all he wants for his birthday is icing (yip the cake topping lol). But my birthday gift to him will be much more than icing or the super cool go kart that he has recently learned to pedal. My birthday gift is a promise – a promise to always love him; a promise that his happiness will always be more important than my sadness over how Duchenne will impact on his life; a promise to renew my resolve to do whatever is in my power to make him proud, to keep him on his feet, to make sure he has the best chance at life. To keep his lungs breathing and his heart beating. And above all, a promise to give him as normal a life as possible. I promise to tell him off when he’s naughty and teach him right from wrong. I promise to teach him the value of life’s most important things – friends, family, love and hope and I promise to try my best to give him the independence all kids need when growing up and to teach him that dreams are worth fighting for – even the dreams that seem almost impossible.
While the last 5 years have moved Luke closer to the inevitable consequences of Duchenne, they have also been filled with wonderful happy memories. I’ve had 5 years of cuddles, and giggles, and little boy chats. 5 years of tripping over Thomas the Tank Engine trains and toy dinosaurs and I’ve watched the movie ‘Cars’ more times that I would want to count and I’ve loved every second of it.
So to my baby boy on your birthday, I promise to love you forever and like you for always. I will do whatever it takes to make you happy and to give you many many many more happy birthdays.