The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

London Marathon 2016: Job done.

2016 London Marathon done, not a personal best time but pretty decent at 04:24 given everything else I have had on my plate.....

It was emotional at points, being out on the course for over four hours gives you a lot of thinking time but I was lifted by all the people lining the route, especially my friends from ShootingStar-Chase Hospice and from the Wimbledon Windmilers Running Club.

Bye Bye Daddy - Talking about death when your child has a learning disability

This is the makaton sign for sad

And this is the makaton sign for Daddy

Daisy uses these signs all the time at the moment, she uses them a lot when people come to the house because she wants to tell them about daddy.

She also uses her voice , at least 100 times a day she says “bye bye daddy” .

Let's talk about death (so we can get on with living)

We really don't handle the whole issue of dying well in this country do we?  It's just not something spoken about, a taboo subject.  We are all going to die so why do we not make sure our wishes are clear so that whenever or wherever it happens those who are left behind know what to do.

We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood.  She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.

This be the Verse....

I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...

It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...