Coming to terms with it all

It's so hard to believe that Daisy has gone, that we will not see her any more, that I won't hear her call out "mummyyyyy!!!!!!!".  She was the centre of our home.  Everything revolved around Daisy, because she insisted it should.  Her siblings were at her beck and call, in and out of her room, sorting out her ipad, responding to her demands, cuddling her, just being there.  That's what Daisy liked more than anything, to know that we were there.  She just needed to have us around.

Over the past couple of months she had been spending more and more time in bed or lying on the sofa, with her ever present ipad, she liked to observe the domestic chaos of our home.

And now this focal point has gone.  And we wander in and out of her room like lost sheep.

How can it be that in the space of less than fourteen months we have gone from a family of six to a family of four?  The house is too quiet.  The washing basket a testament to the reduced numbers.

Daisy passed away on the intensive care ward at Great Ormond Street hospital.  The team did everything they could but in the end it was Daisy's time and she was tired.  She had been tired for a while.  I knew it was coming.  But even when the end came it was such a shock.

We moved her to a lovely room the hospital has on it's intensive care wards.  It's the room for the children who have passed away.  There is no medical equipment, they have made it as homely as possible.  In this room we shed our tears for our girl and kissed her goodbye away from the beeps and alarms in the main ward outside.  The nurses washed her and thanks to our hospice team we then brought her home for one last time.  She just wanted to come home.

Our hospice at home nurse met the boys at home and got her room ready, setting up a cold blanket on her bed.  Xanthe and I followed behind, bringing an empty wheelchair and a bag full of memories.  The funeral directors who had dealt with Andy's funeral the previous January brought our girl home and she spent the night in her bed, surrounded  by all of her favourite toys as we drifted in and out, each spending quiet time with her, stroking her face, hardly able to process the reality of what had just happened.

The next day she was taken to her beloved hospice, ShootingStar-Chase, as we always knew she would.  She stayed on her cold blanket and rested in one of the bedrooms as the special chilled bedroom was already occupied.  This was a better option for us as we could sit in Daisy's room with her and in time allow some close friends to come and say their goodbyes.  Xanthe and I chose her Princess Anna from Frozen dress to wear and my friend Sam brought a beautiful flower crown of fresh roses and eucalyptus.  We sat with her smiling and laughing and remembering so many happy times.

When a child dies and is resting at the hospice the team hang a butterfly outside the front door.  For many years I visited and saw the butterfly, and then it was Daisy's turn.



The hospice seemed so quiet without Daisy, without her pumps beeping or her constant presence checking what everyone else was up to.  I stayed in one of the parent flats and being there cocooned me from the outside world and allowed me time to process what had happened.

But I knew we had to face the reality so last Friday Daisy was moved to the funeral directors and tomorrow I will visit and tuck her in for the last time,  surrounded by toys.  On Wednesday we will take her to school for a final journey and hold her funeral there, it's only fitting that Daisy should do things differently after all.  Her cremation will be held privately with just myself and the three children on a separate date.

We had twelve wonderful years with Daisy, she taught us so much, it's time to let her go and say goodbye.  We will do her proud.




This is the link to the page for donations in Daisy's memory to our hospice


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

RIP




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.

Looking at you now, you would never know

Daisy was born by c-section.  That wasn't in the plan.  My other children hadn't been born that way.  We had hoped for a home waterbirth, the same as Jules two years previously.  But as always with Daisy she called the shots.  Things were not looking good, I had been in and out of labour for a few weeks and eventually my consultant decided that she had to be delivered.

So instead of a valentines baby we had a nearly Christmas baby.

Andy rushed down to the NICU once I was back in recovery.  "It's Daisy Rose" he told the ward administrator when she asked him if the baby had a name.  Years later she told me she still remembered that, after the hundreds of children that she had to officially register as patients she still remembered Daisy's arrival and Andy informing her that she was Daisy Rose.

We celebrated her 12th birthday today.  12 whole years since she arrived.  No-one quite knew what was going on with her, they still don't.  She has so much more than her main diagnosis.  She has something else going on which isn't covered by the Costello Syndrome Diagnosis.  Maybe one day they will find out, maybe they never will.  But she is still here and still defying the odds, despite everything she has been through.

We went to see Disney on Ice today, travelling there by train, Theo came along to help and she loved it.

On the way back she laughed as a man dropped his newspaper in his rush to board the train and he laughed back and smiled.  As he left the train he came over to say hello; "I lost my little girl this year' he said.  "Daisy lost her daddy this year" I replied.

Even though Andy had died a week before Daisy's birthday last year, this feels like the first year we celebrated it without him.  Last year we had made plans for her birthday, last year we hadn't even had his funeral.  Last year I was still numb and in shock.  This year is the first birthday and Christmas we celebrate without Andy.

All day Daisy has talked about Daddy.  When I asked her what she wanted for her birthday she told me "Daddy back".

But life has to go on when you have children, so we celebrated.  12 whole years since Daisy arrived in our lives and turned them upside down.

Running down corridors
Through automatic doors
Got to get to you
Got to see this through
I see hope is here in a plastic box
I've seen Christmas lights reflect in your eyes*

Happy Birthday Daisy Rose




(*Lyrics from Wires: Athlete)

One Year On



14 December 2016

It's been a whole year since we said goodbye to Andy.

12 months.

12 months where we have had to learn to be a family without him.  To keep going without his larger than life presence.

I still can't believe he's not with us.

I still can't believe that the clock stopped a year ago today.

I have barely had time to catch my breath this year.  Holding the family together, dealing with the fallout of his passing.  The paperwork, the stuff that needs to be done.

Learning to be the sole parent.  Learning to make big decisions about our children's lives on my own.

Learning to stand straight, without my rock to lean on.

Fighting for the support my children need.  So that they can get through this time.

I have had to put my own grief on hold time and time again.

Next year will be harder, I can no longer pretend he's away, in the next room, coming back soon.

Next year I know the reality will hit.

Thank you to everyone who has been there for us this year.

Please keep checking in on us.

We are still hurting.

We love you Andy and miss you so much.

One in a million.



Decisions, changes....

When Andy was alive we always worked on the assumption that we would outlive Daisy.  That we would not need to worry about what would happen to her if we were not around.

But things are different now.  We did not expect Daisy to outlive us.  We did not expect Andy to die. It's the first anniversary of his death in two days.  Next week it will be Daisy's 12th birthday.

I never in my life thought I would be remembering the passing of my husband one week and then celebrating my life limited daughter's birthday the following week.  The world has been turned upside down.

But it is what it is, so I need to accept this.

However this means that plans need to be made which I never thought I would have to make. The main one being; what happens to Daisy if anything happens to me?

All the firsts

It's been nearly a year now.  It's been a tough year.  So many firsts; first father's day, first mother's day, first wedding anniversary, the children's birthdays, first new school year, first football season.... the list is endless, every day of this year is the first one since Andy left us.

But the big ones are coming now.  The first time we celebrate his birthday and he's not here anymore.  And we will celebrate it.  Celebrate that he was here, that he was born, that he lived.

The older children and I are going away for the weekend.  We'll raise a glass on Saturday as we remember how much Andy insisted on making such a huge deal of his birthday; "I can't load the dishwasher, it's my birthday", "I have to watch my film/netflix series/sports programme (insert preference here!) - it's my birthday".  So we will make it special and wish him happy birthday, the first without him, now that time has stood still, he will always be the same age.

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