Thank you for the days

The post I always knew that one day I would write is the hardest.

Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy.

At 2.35pm this afternoon her life support was switched off and Theo and I held her hands as she took her last breath.  Jules, Xanthe, Theo and I surrounded her with love as she left us to go to a place where she can run and jump and skip and play to her heart's content and be Daisy, not a syndrome, a diagnosis, just a little girl.

I have a certificate that says she died of septic shock but I think it was just her time to go, her little body was slowing down, she was needing more and more medications and painful procedures and over the past few weeks she just preferred to lie in bed and let us come to her.  She missed her daddy so much and talked about him every single day, I think her heart broke when he left us.

We were honoured to have her in our lives for twelve years.  Twelve years where she not only defied the odds but truly lived.

Everyone who met Daisy never forgot her, she changed so many lives, such a beautiful legacy.  She gave me purpose, meaning and direction along with a few more grey hairs than I should have at this age but my life and the life of her brothers and sister have been made so much more meaningful by her presence.

Daisy deteriorated very quickly and she just wanted to go home but it was not possible but thanks to our hospice and the cold mattress they set up in her room we brought her home this evening for one last night in her own bed, surrounded by her toys.  She looks like she is fast asleep and any minute will wake up and tell us, as only Daisy could to "go". Tomorrow we will take her to her beloved Shooting Star Hospice, just as we always planned.

Theo thanked the ICU consultant for allowing her a dignified death.  We will always be grateful to Great Ormond Street hospital for being there for Daisy on her final journey and for never, ever giving up on her.

I cannot believe that she has gone, she defied the odds over and over and was determined to make her mark on the world. She did.

Daisy Rose Nimmo
Sunrise - 22/12/2004
Sunset - 31/01/2017


In Daisy's hands

I wasn't supposed to be writing this update.  This update was supposed to be all about how it really does take a village to bring up a child like Daisy, joined up services around education, health and social care.  How I have been struggling for months trying to sort up some joined up thinking to support me to keep Daisy at home while also allowing her to access the education she needs and wants.  I wish I was writing about this, but while I have been trying to sort out some joined up thinking and encouraging teams to communicate so that we have the basics in place like hoisting and care I have also been really worried.

Realistic Resolutions

"I don't make resolutions"

Andy always made this announcement at New Year (whenever I started reeling out my list for the year).

He firmly believed the focus should be about changing habits , not making unrealistic promises.  "It takes six weeks to change a habit" was his rationale and he felt that you didn't need a point in time like a new year to make changes, we should be constantly thinking about what we would like to do differently or change and make realistic goals so we don't set ourselves up for failure.

I do like a resolution however, I love a deadline, it drives me and being a naturally competitive person it gives me something to work towards.

In 2012 I resolved to get back to running again.  I had always been a regular runner, even from my teenage years but it had tapered off as a result of the long hospital stays with Daisy, the comfort eating was making me bloated and I took a look in the mirror and decided that this was not what I wanted.