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


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