Wear Purple for Eilys Day 2018

It is a month today until what should have been Eilys’ 3rd birthday. I cannot believe that is nearly 3 years since I first met her. It seems like forever ago and like no time at all. It is nearly 2 years since our last cuddle with her and again, I can’t believe it. It... Continue Reading →

Grief Guilt

It is that time of year again. The bluebells are out. The sun is making more of an appearance. It is warmer. It is the time of year where I start to feel saddest. This time of year is always going to make me reminisce and feel sad. It is the anniversary of Eilys being very... Continue Reading →

My thoughts…

I’m reblogging this in light of the Alfie Evans case. This time it feels so personal. I think about all the incredible Doctors, nurses, physios etc who helped Eilys and us are now potentially having abuse hurled that them on their way to work. I think about the children and babies who have a mob outside their hospital windows as they are poorly, recovering or dying. I think of all those worried parents, parents of ill children. Parents making impossible decisions and parents who have just lost their children who have to battle through a rabble of protesters to get to their children or home again. Alder Hey were so wonderful to us, I count us as lucky to have been under their care. Alder Hey felt like a safe space for us all. It is a truly special hospital. So please stop this. It’s not helping anybody, certainly not that very little boy in the middle of it all.

I know this blog post is about Charlie Gard but my feelings are the same towards this case too.

The Glass Half Full (of Gin)

The case of Charlie Gard has been weighing on my mind for quite a while and I’m finding it all really quite upsetting. It is definitely trudging up a lot of thoughts and feelings about Eilys. Maybe we should have tried her in a drug trial or kept her alive with machines, maybe we should have ignored our Doctor at Alder Hey and found another who told us what we wanted to hear. If we had, maybe she’d still be here. Maybe.

We were offered a drug trial. In fact there were 2 going on in the UK when she was diagnosed and we did look into them but decided against taking part. One was in London and the other was in Newcastle. Both would have meant travelling to and from either place once or twice a month. Both would have meant handing Eilys over to some researchers for a…

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Going from 1 to 2, twice

I have been thinking a lot recently about how different it has been during the first few months with Eilys and with Evan. I suppose I am in a fairly unique position in that I have gone from having one child to 2 children twice. It is a fairly unique experience but also very depressing... Continue Reading →

Dairy free, the baby and me

About 4 weeks ago I tootled off to the Doctor’s (I swear I sound like I live at the doctors at the moment, I have only had 1 appointment I just packed issues in). My Doctor is awesome and we were chatting about the new appointment booking system at the surgery and I said that... Continue Reading →

Toothpaste: Our battles with a Quintager

“Mummy I don’t like this toothpaste” “Why not?” “It is too minty. I am not using it. Can I use your toothpaste?” “My toothpaste will be more minty” “More minty but less minty. I like your toothpastes mintiness” “Right. Ok, just today” “Ok” ... “Daddy bought you some Paw Patrol toothpaste” “Yay” “I am glad... Continue Reading →

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