Set adrift

I'm in a no-man's land at the moment.  Set adrift from a place I once knew.  It wasn't perfect, but I was easy in it's familiarity.

For years and years it was Andy and I , together, a team.  We weathered the storms and adversity brought us closer.  He was my best friend as well as my husband, he was the first one I would turn to when I wanted advice, to share good news, to vent, to gossip.  I would joke that I could never have an affair because I would want to tell him all about it.  We were a couple, a team. Our circle of friends was other couples.  We dreamed about the day when we would have our time again.  It was never to be.  Now I am no longer in the category called "part of a couple", now I'm an outsider, an intruder. 

When I walk home across Waterloo bridge there is no-one to meet for a sneaky drink before going home, there's no-one waiting at home to take my coat and ask me how my day was.  I'm in an alien world, I'm having to negotiate a new normal.  I can't remember the last time I went out for lunch or dinner.  We used to try and do that as much as our life with Daisy allowed.  It was our time, a date over lunch, a quick visit to the pub during a hospital stay, a cinema trip when we had a respite stay booked.  It was less time together than most other couples our age, but it was precious time together.

Now I sleep in an empty bed and remember how nice it was to have someone to cuddle up to.  Someone to chat about the day's events to.  Someone to notice if I am down or ill.  To share my happiness, to celebrate my successes.  They seem hollow and empty without someone who really cares.

I'm set adrift in an alien world and just when I thought I knew where I was the world became even more alien.

When Daisy died I lost my purpose.  I lost my job.  I lost my routine. I lost my tribe.

I am no longer a TPN Mum, a Costello Syndrome Mum, an epilepsy mum.  I can now only share my knowledge of what I knew for us.  I feel a fraud in the groups and forums I was once an active member of.  I feel I should leave them, my knowledge is in the past now.

I'm set adrift from the world that sustained me after Andy died.  The world of hospitals, of TPN, Catheters and IVs, of continuing care plans and respite stays and endless battles to sort out all the stuff that was part and parcel of Daisy's life.  It gave me focus and distraction after he died, I needed to keep going for Daisy, it was my familiar world and caring for Daisy, for all my children, was my priority.

Now Daisy is gone, leaving an unbearable void. 

Her death has blown me off course. 

I've been trying to find a new place to settle.  I miss my old world so much.  I miss being a wife.  I miss being a warrior for Daisy.  I miss the people who were part of that world.

I'm hoping that 2018 brings us some stability.  Some respite from the storms.  I need to find my new normal, I need to find who I am now that my old world is no longer there for me.

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.

Always on a Friday evening.....

I had a dream the other night, it's one I have quite a lot .  The one where I am on my own at home, doing Daisy's IVs late at night and I go to the drawer to get out some more syringes and there are none there.  I feel that familiar panic, "what do I do now? , it's the middle of the night, the children are asleep, I'm on my own, how will I finish these IVs?  They are time-dependent, if I don't get them done now then the schedule will be thrown, putting Daisy at risk....."  I wake up, my heart pounding.

Not too long ago this wasn't a dream.  This was my reality.  24/7 worry.  Constantly topping up the medical supplies, trying to forecast how many syringes, needles, saline flushes we would need, whether the doctors would change the dose and this would throw my calculations and we would be short. 

There was nothing more satisfying to me than a tray of IVs that I had draw up myself, quite frequently there were 2 trays worth to be drawn up and administered.  It kept her out of hospital.

Snakes and Ladders

I haven't updated for ages, once again the poor blog has been neglected.  My life has been taken up with lots of writing projects, some freelance commissions as I try to earn some money and lots of opportunities to speak and share my story.

Sharing my story - that's the common theme in everything I've been doing recently, not just to simply share my own story but in doing so hopefully encourage others to share theirs or even be a voice for those who cannot share theirs.  I want to share our story because talking about Daisy and Andy keeps them alive, it helps people to know them as people, not the pieces of an awful tragedy.

I find it therapeutic but it is also emotionally draining, I watch the faces of the people in the audience and I see their reactions as I speak.  Some people inevitably cry.  But the more I share the more people open up with their stories and that must be a good thing.

I've been involved in a couple of "Was this in the plan?" versions of Death Cafes over the past few weeks.  Amending the traditional "Death Cafe" format to include conversation starters and an opportunity to share my story to demonstrate to the attendees that it's OK to talk about death, it's actually quite liberating.  There was a lot of laughter at both events and there will be more, I promise.