An Open Letter to my Son on his Birthday
To the most incredible person I know, my son.
Next week you turn 8. A number at times along the way I didn't think you would make.
I can't believe that 8 years ago we were waiting for your arrival and today you have turned into an amazing superstar.
The journey hasn't been an easy one for any of us, least of all you.
I've spent countless nights stroking your head after a seizure, whispering that everything will be ok.
I've cried with you when you've been sad and exhausted.
I've rocked you and calmed you when your body is consumed by pain.
I've massaged your legs to reduce the cramps.
I've stayed up all night and watched you breathe to make sure the next breath comes.
I've spent hundreds of nights lying by you in hospital watching the machines bleep checking you are still alive.
I've taken you to many hospital appointments to get you the right treatment.
I've fought for you to have what you deserve and to make your life more comfortable.
I've administered lifesaving drugs and helped to save your life.
I've held my breath when you've held yours willing the next one to come.
I've celebrated all your milestones from opening your hands to holding up your head. I've rejoiced with you every time you get star of the week for being so clever.
I've been overwhelmed with pride when you demonstrate new skills like using the eye gaze.
I've been flooded with excitement every time you communicate with us using your eyes or any form available to you.
I've shared the utter love and warmth that you give from the best cuddles ever.
I've been melted inside from the times you look directly into my eyes and babble away telling me all about your day.
I've shared your excitement over CBeebies and watched many hours of toy story holding you close.
I've made hundreds of memories with you at home and away.
I've been splashed by you in the pool when you kick your legs in excitement.
I've experienced the pure delight and utter calmness of just being in your company.
I've taken on many roles to care for you on our journey so far; nurse, carer, driver, PA, physiotherapist, supporter amongst many others, but by far my greatest role is simply just being your mummy.
You make me the proudest person every day to see your strength and determination but above all that your love of being around all of those who care so deeply about you.
Thank you for the hardest but most rewarding 8 years of my life so far.
Love mummy xx