To my daughter Phoebe.

Your brother was diagnosed 3 years ago and I wrote all about my feelings of diagnosis back then and since in my blog – My Boy Duchenne & Me. Those feelings don’t mention you all too much, even though you were only 8 months old, but you were and are there in my thoughts so so often.

Today is a VERY tough day to get through – to stop the flash backs, the panic, the sweat, the heart pounding, the helplessness, the feeling of loss, the aching heart, the memories of that fateful call.

You are mentioned in many blogs, but really you don’t feature too much, and for that I am sorry.

I hope you’ll understand that mummy was going through anticipated grief when William was diagnosed. I didn’t know what it was at the time, but it made me very low and therefore has made me forget a large chunk of your first year of life. For that I am so sorry for you and for me – I will never remember some of your key moments. I can imagine you were just amazing, knowing the wonderful little girl you have become so far.

What scares me is that it made me forget moments before diagnosis too. I didn’t remember that I’d actually had you Baptised in the November. I don’t remember that Christmas, you’re first. Where these memories have gone, I’m really not sure. Let’s hope one day I’ll regain them and remember some of your special moments of your first year. I can look at photos and really not remember a thing, scary.

You are often left in second place to Duchenne, but it’s not something I mean to do. I must remain a balanced mum to give you all the attention you need. Whether you would have grown up so quickly if I’d been able to dote on you both mentally and physically, I won’t be sure.

I love your strength, character, loyalty, love and craziness. Please keep being my amazing little girl forever.

I hope that when you grow up (not too quickly), you still love and want your mummy around as much as I do with mine. It’s a special bond to have – mummy/daughter.

“Tragedy is part of life and you have to show it. You can’t have sunshine throughout your life.”

This may be true, but I do believe that both you and your brother are my eternal sunshine and I love you both dearly.

Keep being you, keep dressing in your own style, keep waving those lush locks, keep wearing glitter boots, keep telling daddy he smells, keep getting away with your cheekiness just with that smile.

I love you my baby girl,

Mummy x x