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?