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.

Be careful what you wish for

Christmas.  For Daisy this was the most important time of the year (closely followed by her birthday, and then everyone else's birthdays).

 The build up started in the summer.  With the demands for me to write lists for "Ho Ho Ho".  She loved to send letters folding up the pieces of paper she had scribbled on and demanding a stamp so that they could be sent (quickly please mummy)

The Singing Hands Christmas DVD would be on constant loop and gradually over the months excitement would build as decorations appeared in the shops and the rest of the world caught up with Daisy's festive enthusiasm.  Last year I even broke my absolute rule and put the tree up in November, it had been getting earlier and earlier each year and last year was the first Christmas since Andy's funeral and I was prepared to do anything to make it special, including giving in to Daisy's demands and putting the tree up before December.

I'm so glad I did.  I'm so glad I trawled the internet trying to get hold of the Baby Alive doll she kept watching You Tube videos of.  I'm so glad she dressed up in her Christmas hat and visited friends,  delivering cards and presents.

visiting the GP surgery to deliver cards to our friends there

Wear Jeans, Change Lives

Daisy was born with a completely sporadic gene mutation which caused her to have the rare disease, Costello Syndrome.  She was rare, especially as it was likely that she had some secondary, undiagnosed mutation which caused her to have such extreme symptoms.

An anniversary gift to Andy

The best piece of advice I have ever been given was by a colleague when I was working at Hewlett Packard.  I really wanted a global role and to spend more time working internationally.  "Decide what you really want and make it happen" she said "otherwise you will just make an excuse".

This has become the mantra for how I have lived my life ever since. (I got the role by the way).   It's what has helped me to develop the resilience and drive to get through some of my toughest times over the past few years.  

I wanted to be the best possible mum for Daisy, I wanted to make sure that our other children did not miss out on childhood, I wanted to ensure our marriage would survive...

After Andy died I was determined to write the book that he so wanted me to write.  I wanted it to be published by our 25th wedding anniversary, my gift to him.

So young! 12th September 1992

Long hot summer just passed me by

The long summer holiday.  Obviously I use the word "summer' in the loosest sense of the word as I have resorted to firing up the woodburner and digging out my winter boots on more than one occasion this summer as we enjoy the ups and downs of the British weather.

Thanks to the "on this day" function on Facebook I receive daily reminders of previous summers.  Last sumer when Daisy developed shingles just before I was about to go away for a much anticipated school reunion and how she bounced back as only Daisy could so that at the eleventh hour I could make it.  The week's  break Andy, Jules and I took in Southwold when Andy was recovering form his SIRT treatment - sitting together on windswept beaches, plenty of shots of all the lovely food we consumed that week.