The Multi-Disciplinary Meeting

I was 36 when Daisy was born.  I already had seven years of parenting under my belt.

I was acutely aware that in many ways I had so much more in my favour than many other parents embarking on the journey of caring for a complex child.  I was probably closer in age to many of the professionals treating my daughter over the years, I had reached a high level of academic attainment in my own chosen field of expertise, I spoke fluent english and I had the support of one of the best management development coaches in the business, my own husband.  I knew how to negotiate, I knew how to manage complex projects.   

Yet despite all of that, entering a room full of professionals who were all gathered to discuss the fate of my child was one of the toughest things I have had to do.  Nothing in my previous life could prepare me for it.  I felt disempowered and vulnerable.

When Life Gives You Lemons: Debs Aspland

When Life Gives You Lemons is my blog series profiling some of the incredible people I have met during my journey.  People who, like me, have faced adversity but refuse to be defined by it.

Next up is Debs Aspland.

I first met Debs very briefly in 2012 when we both attended the Britmums Brilliance in Blogging Awards.  We bumped into each other again a couple of years later when were invited to meet with and give feedback to the Minister of State for Children and Families.  However it was over drinks on the Southbank that I really got to know Debs and recognise her for the kindred spirit and fellow warrior she is.  She definitely shares my rebellious streak and I couldn't wait to ask her to be the subject of an interview for my When Life Gives You Lemons series.

Mothering Sunday

So here it is, another Mothering Sunday. The second without Daisy.

I was asked this week what I say when I am asked how many children I have?  Always four, I always will have four children, I replied.  She may no longer be here but she will always be with me, every single day.

Mother's day is hard.  That day when we celebrate motherhood.  We all have mothers, some of us are lucky to be mothers or to have made the choice to have children.

I always wanted children, just not straight away.  I'm so glad Andy and I waited for a few years.  I'm so lucky that I met him when I was young so that we were able to have that time together, to cement our relationship, BC – before children.  It seems like centuries ago, a completely different world away.

When Life Gives You Lemons: Lucy Watts MBE

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I'm delighted to launch a new series on my blog today, it's called When Life Gives You Lemons.  Over the years I have had the pleasure to meet and get to know some incredible people, many of whom have faced adversity and have decided not to be defined by this but instead to seize the day and make the most of their situation.  Andy would always say "When life gives you lemons, make lemonade!". It as always been the spirit by which I have chosen to live my life so I thought it was about time I shone the spotlight on some other people who are also making lemonade.

Today I would like to introduce Lucy Watts MBE.

 I first met Lucy online about 5 years ago and got to meet her face to face in 2014  I was speaking at an event for the children's Palliative Care Charity, Together for Short Lives and Lucy was there also with her mum Kate in her role as a young ambassador for the charity.  We have stayed in touch ever since and I am so glad that she was also able to meet Andy.

How did I do it?

A year ago I woke up and gathered every last shred of strength I could muster to get out of bed.  I did my hair and makeup and put on a bright cerise dress, pinning a large pink daisy corsage to the front.

I was going to have to do it all over again, a year after I had delivered a eulogy at my husband's funeral, I was preparing to speak at my daughter's funeral. 

I released a dove at Daisy's funeral

My poor children were once again going through a public mourning. I look back on the footage of Prince William and Prince Harry walking behind their mother's coffin and I can feel their pain.  My children did that twice, in the space of a year they faced the funeral of their father and then their sister.

And then she was gone

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan

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.