Definitely not in the plan

We survived Christmas, just.  It was as anticipated, fraught.  It was Daisy's excitement that made Christmas special.  Like any family with small children it was all about the carrot for Rudolph, the drink for Santa, hanging up stockings, coming downstairs early to tear off wrapping paper.

You all know how much Daisy loved Christmas.  So her absence left a huge void.  Suddenly we were being forced to transition to a grown up Christmas, acutely aware of who was missing.





Forever Twelve

It's Daisy's birthday.  She would be a teenager today.  But now she will be forever twelve.

I'm not sure how I feel.  If Daisy was still here to celebrate her birthday I wonder what we would have been able to do, what she would have been able to do?

Last year we went to see Disney on Ice.  She was so excited to see her favourite character, Olaf, from Frozen.  We left after the interval however.  The noise was overwhelming for her, she was uncomfortable, she was trying so hard but it was just all too much and her excitement turned to anger as she lashed out at anyone getting too close.

This time last year I was starting to have conversations about changing her wheelchair to a bigger one, one that she wouldn't be able to wheel herself but would give her better  support and comfort.  I knew that our trip to see Disney on Ice was probably the last treat, not because I knew she would die but everything was becoming harder and harder for her. Getting out and about was just too difficult, for Daisy and for us.

Song for Ten. Two years in.

"A young widow is a statistical outlier" - I read that in a paper today, it was part of a feature on Christmases without your husband.  I was 47 when Andy died and much as I thought life was tough, it got tougher still.  Sole parenting four grieving children, being on my own making decisions about my youngest daughter's end of life, organising and speaking at two funerals.  It's not what you expect to do in your forties.  This was supposed to be our time, now I'm on my on and I'm still tied to term times and parent-teacher meetings.

Yesterday we got through another December 14th.  The anniversary of Andy's death. 

I talk to him a lot.  Whole conversations.  We were together for so long I know what he would say, how he would react.

Two whole years have gone by since I last held your hand Andy.  So much has happened.  We have been tossed about in the biggest waves, we are bruised and battered by experience and sitting blinking on shore.  This is our new life and I know you would be so, so proud how despite it all, our devastation at losing you, then losing Daisy, we are still standing, we are still moving forward, we are carving out a new life, taking our steps on yet another unknown path, but missing you so much.

It's funny, I still expect you to just come back home as if nothing has happened. Asking for the latest news, the football results, you would be taken aback by the changes we have made at home.  I wanted the children to know that we are moving forward but not forgetting.  All those years caring for Daisy, house maintenance took a back seat, so we've been redecorating and changing things around, it doesn't have to be wheelchair friendly anymore, I think you'd approve.

Deck the halls

It was always our rule to wait until 12th December to put our Christmas decorations up in our family.  That's my dad's birthday.  Even though my dad died seventeen years ago we stuck to that tradition for a long time.

Until of course Daisy came along.  Like many people with a learning disability, Daisy was obsessed by Christmas.  The Singing Hands Christmas DVDs were played all year in our house and lists to "ho ho ho" were scribbled whenever Daisy had access to paper and pens.

As soon as Christmas decorations appeared in the shops her excitement would mount to fever pitch with a constant demand of "where tree?".  Most years I was able to hang on until the earliest days in December but last year Daisy wore me down.

Last year our tree went up at the end of November.  Last year had been so tough for us all, trying to come to terms with life without Andy.  The Christmas after Andy died it was such a blur that required superhuman effort to get through, we hadn't even had his funeral at that point.  The Christmas Andy died was something just to be negotiated.

So last year I wanted to make up for things, I wanted to make it doubly special.  Just as I had all those Christmases after Daisy was born, so aware that her first Christmas was spent in hospital and our family was apart on Christmas morning.

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