12/09/2016 10:59 BST | Updated 12/09/2017 06:12 BST

Who Am I?

Who am I?

Who am I to have chosen to keep you, regardless of the health implications it would mean on you? I couldn't let you go.

Who am I to decide what's best for you, to be your voice because you, yourself are non verbal?

Who I am to put you on all of these drugs regardless of the side effects? To watch you go from happy to sad. From vocal to silent, from hungry to not eating. Either sleeping too much of not enough. The side effects have always been a major problem.

Who am I to say yes to brain surgery, not once but three times? To try to remove those horrid lumps so you can have a real chance at life. To hope that the seizures will stay away and give you some time as just you.

Who am I to sit and watch and play a part in the doctors poking and prodding you? To hold you down whilst they take blood, scan you and check you over.

Who am I to starve you in preparation for an mri scan, to watch you hungry and confused not knowing what is going on?

Who am I to hand you over to the doctors, to watch them put a mask over your face? To see your eyes flicker as you give in to sleep, and then walk away. Not knowing if the same child will wake up after a 5 hour operation.

Who am I to put you on this drug trial, to watch as you get blood drawn from you time after time again?

Who am I to make all these decisions about your future, to take your life in my hands? To decide what's best for you.

Who am I to plan your every day, you get no say in what we do or where we go?

I am your voice, I do these things because I want the best for you. I want you here with me for as long as possible. Although what you have gone through is hard, and every day is a battle. I need you, here with me. Because without you I am nothing, I am no one. But with you I am your mum x