The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

We shared happy memories and stories, people from all parts of her life spoke, Doctors, Nurses, Carers.  So many wonderful stories, there was laughter, we shed tears.  Daisy was the star of the show, she would have loved it.

It's so hard saying goodbye to someone who was so full of life.  As, Ella, her psychotherapist said , the clock struck twelve and it was time for Princes Daisy to leave....

We all gathered around at the end and waved her coffin off, her  final committal was always planned to be a very private event, and it was.

This rainbow appeared over Daisy's hospice at the time of her funeral

Today, Theo, Xanthe, Jules and I said our final goodbye, away from everyone, just us, the people she loved more than anyone in  the world.  We went to the crematorium first thing this morning and  Daisy was carried into the chapel in her lovely pink willow coffin.  

 We played her favourite song from Frozen, we danced to  music from Monster's Inc and then when we were ready and we had laughed and cried and reminisced, all four of us pressed the button on the lectern and the curtains closed around her coffin and she was gone.  Daisy loved nothing more than having us all to herself and it was fitting that it was just us, for her final journey as we said goodbye for the last time.

I'm so proud of my family.  Theo, Xanthe and Jules have been through more than any child or young person should ever have to go through yet they have come through it and grown as human beings as a result.

I wanted to share the euology I gave at Daisy's funeral, it's her story, it's our story.

"It takes a village to raise a child.  And every one of you here today played your part in Daisy’s story.  And what an incredible story it is.

Twelve years of a life well lived.

If Andy was stood here today, he would be reminding you, just as I am going to now, that we have to focus on what we have , not what we don’t have.

Daisy is not with us any more.  But we always knew we would not have her in our lives forever, that one day she would leave.

But what she has left behind is so precious.  Happiest memories, so many rich, life changing experiences.  The ripples of Daisy’s time on earth have spread far and wide.

I am so proud of her.

You all knew a bit of Daisy, let me tell you about the Daisy we, her siblings and I, knew and loved so much.

Daisy was a much wanted fourth child.  She was given the name Daisy Rose by her equally determined and feisty big sister Xanthe who had decided that the name Ophelia just was not going to cut it. And anyone who knows Xanthe ,knows not to argue with her.

From day one Daisy was going to do things differently.  My first caesarean birth, she arrived just before Christmas in 2004 instead of her due date which should have been around today.  She was blue and angry and even in those early neonatal days made her mark as the doctor’s scratched their heads, wondering what was going on with her.

She spent eight weeks in the neonatal unit. Within a few short weeks of being at home however Daisy was back in hospital and quickly transferred up to Great Ormond Street Hospital.  It was while there we met a geneticist who had written a paper about Costello Syndrome and felt that it was highly likely that this was what Daisy had.  She was also diagnosed with a multitude of other issues and spent some time in the intensive care unit.  This was to be our life from now on,   juggling the care of our older children, only 7, 5 & 2 when Daisy was born, with their fragile sister’s ever complex needs.

In the summer of 2005 we had confirmation that Daisy did indeed have the gene mutation that causes Costello Syndrome.  At the same time we were also thrown a lifeline as we were accepted for support by our hospice, then called Chase (it merged a few years later with Shooting Star).

Our stays at Chase were wonderful, our children were all so young it gave us family times together and some respite from the constant worry.  Our older children loved it there and at long last Andy and I were able to get a bit of a break.

Daisy’s medical issues continued, by the end of the year she was on a feeding pump for twenty four hours a day, she had a lot of problems with her blood sugars dropping and seemed to have a lot of pain.  She cried a lot, and never slept, she arched her back in pain and Andy and I walked around like zombies from lack of sleep.

But we muddled through, through the emergency hospital dashes, the outpatients appointments, trying to be there for our other children, Andy managing his full on career.  It was the most stressful of times .

Andy described our lives as being like sitting in a speeding car, bracing ourselves for an impact.  The problem was we did not know when that impact was going to come and while we were worrying about the future we were missing the amazing views from the car window.  We decided to stop bracing ourselves for the inevitable and to enjoy the ride.  So we took our seatbelts off and just went with the flow.  It was a lesson that was to serve us well over the years.

In 2007 we took our family on the trip of a lifetime – we decided to go to the Costello Syndrome family conference in Portland, Oregon .  We combined it with an incredible road trip around the pacific northwest, driving along the coast and then on to Canada.  While at the conference we met so many other children and young people with Costello Syndrome, they all looked like Daisy – huge smile, funny hands, curly hair.  But even then Daisy was different, she was the only child not growing out of her feeding issues, the only one on a twenty four hour gastrostomy feedpump, she seemed a bit more fragile than the other children but she won many hearts and our Costello family has remained close to us ever since.

Daisy paddled her feet in the pacific ocean during that trip, we went to mount st helens, we visited the first ever starbucks in seattle, we sat in a hot tub under the stars and we took a chair lift to the top of a mountain overlooking Vancouver.  That trip gave us so many happy memories and experiences, ones that would sustain us as the following year as Daisy’s health deteriorated and although she started fulltime school in September 2008 by the following month she was back in hospital and this time did not leave until the summer of 2009.

She was diagnosed with intestinal failure and a range of other issues which basically meant that she was unable to receive nutrition by the ordinary route, even via a gastrostomy.  Daisy now had a central line, a permanent line which was tunnelled into a main vein into her heart and she received her nutrition intravenously, total parenteral nutrition or tpn which had been discussed for a long time as a possibility, with all the huge risks that came with it, was now very much part of our lives.  Over that year in hospital, Daisy had already battled sepsis on several occasions, she had bugs on her bugs, she was dosed up with antibiotics and antifungals that would fell a grown man yet still she bounced back and defied the odds.  As we faced her first Christmas on TPN in 2008, while still and inpatient and no hope of a discharge on the horizon,  our wonderful hospice nurses moved heaven and earth so that we could have a few precious days at the hospice and not on a hospital ward. This time spent as a family was so important for us, Daisy was just happy to be with her siblings and they were happy to be with her, all together again, just for a few precious days of respite.  This was the story of our lives – we would grab our moments wherever and whenever we could, making time to enjoy the little things because in reality those are the big things.  Cuddling up on the sofa, reading a bed time story, just all being together around the table.

Over the years Daisy met more than her fair share of celebrities but , with the exception of Singing Hands, she would swap time with any of them for time with her family, the most important thing in her life.

She famously signed to Johnny Depp that she was disappointed that he wasn’t Peppa Pig, she sat with Princess Eugenie in Buckingham Palace and made her help her make a Christmas decoration , she was not amused by meeting Kylie although her daddy was very amused by the fact that he managed to put his arm around Kylie’s teeny tiny waist for a group photo, she smiled for a selfie with James Corden and tried to steal Simon Cowell’s phone.

But all this was nothing to Daisy, for her going to school, playing with her friends, throwing a ball for Pluto, making a trip to our local Sainsburys where all the staff knew her well, just sitting around the dinner table with her family all together – these were the things she loved more than anything in the world.  Her most regularly used sign was family, closely followed by the sign for Daddy.

When Andy was diagnosed with cancer we worried how to break the news to Daisy, we were very open that Daddy had a poorly tummy but we needed her to understand that it was a different poorly to hers.  She was so amused when Daddy also got his own central line or wiggly as we called her line.  And thought it was hilarious when his hair fell out.

Daisy had taught us to truly seize the day and this became so important after Andy’s cancer diagnosis and his treatment.  I wonder if we would have dealt with that bombshell and his subsequent death so well if we had not been living Daisy taught us.

When Andy died , Daisy was heartbroken and I don’t think she ever really recovered.  Every single day she talked about him, frequently signing that she was sad.  She missed him so much, he was a really hands on dad, doing his fair share of hospital stays, IVs, stoma bags, catheters.

Andy and I used to both take great pride in our every increasing medical skills – a beautifully drawn up tray of IVs was a thing of great joy for both of us.  We learned everything that we needed to learn in order to keep Daisy at home and out of hospital.  That was the most important thing for us, having had such long hospital stays in the early days and realising that Daisy would be on TPN for all her life, that a transplant was not an option, it was vital that we did everything possible to stay at home and care for Daisy.

We fought hard to do this and I hope that by highlighting our story and fighting for Daisy’s care and support we might have made it a little bit easier for other families to do the same.  We were supported by health professionals who understood our need to ensure that Daisy was a little girl first and foremost.  That has always been my mission with my writing and speaking – it’s always about a child who was entitled to a childhood, regardless of how short and a family who needed to be together as a family.

We made this happen, and thanks to the support of Shooting Star-Chase, The Children’s Trust and the Rainbow Trust we got to take a break from caring and focus on our other children who also only had one shot at childhood and needed to have their parents around

2012 was the happiest, best year for our family.  Daisy was, by Daisy standards, relatively stable, we got to spend a lot of time watching the Olympics and Paralympics, moving around London with a wheelchair was easy for a change and we made the most of everything.  Theo met his girlfriend Ria and miraculously they are still together.  We took my favourite ever family picture at the Olympic Rowing at Eton Dorney.  Daisy was still able to walk with assistance, we even dared think about going to America for another Costello Syndrome conference the following year.

But sadly epilepsy came to pay a visit and our lives went up a gear once again.  Epilepsy and the drugs that Daisy needed to try and control it took away a little bit of our girl, she was never the same after the seizures came and she lost a lot of skills.  Life became far more stressful and even more unpredictable and the trips courtesy of London Ambulance Service became more frequent but somehow, drawing from strength we didn’t even know we had, we managed and we were still determined to have a life, regardless.  Our trip to the Costello Conference was cancelled but we still got out and about, perfecting the art of managing Daisy’s seizures in public so skilfully that no-one even know she was having a tonic clonic in the middle of Marks & Spencer. 

So layer by layer Daisy’s health became more and more complicated and we adjusted our course and found a way to manage and still be true to our promise to ensure that our children had a childhood and Daisy had the chance to be a little girl first and foremost.

Pluto arrived on the scene.  Daisy’s beloved dog.  After a really positive experience meeting pets as therapy dogs in school and hospital and mindful that our children were getting older and would want to spend less time with their little sister, we decided to get a puppy. Daisy was determined to call him Pluto .  So our crazy cocker spaniel arrived in September 2015 and it was love at first sight for him and Daisy.  He knew she was different to all the other children, it was only when Daisy was in her wheelchair that he calmly walked next to her on a lead, when she had a seizure he would lick her face, when she was poorly, Pluto lay next to her on the sofa or outside her bedroom door.  Pluto was the best thing to happen to our home for a long while and his timing could not have been better because only a few months after he arrived in our lives Any was diagnosed with stage iv metastasised colorectal cancer.

Last January we held Andy’s funeral and a few weeks later, around this date, Daisy released balloons into the sky from the garden of her hospice and waved bye bye to him.  Now she is playing in the stars with her beloved Daddy.

I firmly believe she chose her time, her health was deteriorating and she missed him so much.  We had been through all the anniversaries, she had celebrated her 12th birthday with a trip to see Frozen on Ice at the O2 – on the way back I said to Theo that it was the last big trip we were realistically going to be able to do, Daisy had only been able to cope with the first half of the show and the travelling had been exhausting for her.  We had the most wonderful Christmas, with Cousin Deb and Dominic and their equally crazy dog, Gumbo.  Daisy lay on the sofa , loving the mermaid tail blanket her cousin Eve had given her for Christmas and watched everyone, always the focal point of the room.  After Christmas, just after the first anniversary of Andy’s funeral Daisy’s health began to deteriorate and we made a couple of trips to the local hospital assessment unit to get her checked out, she was becoming more and more lethargic and spending more and more time in bed, I knew in my heart of hearts that this was going to be the year, I just didn’t realise how soon we were going to lose her.  But Daisy chose her time well, I took her to A&E in the middle of January and the staff knew how much I was worried when I readily agreed to her being admitted, as always there was nothing that we could put our finger on that indicated what was wrong with Daisy, but something was clearly wrong.

We transferred to Rainforest ward at Great Ormond Street at the end of the month and when Daisy took no interest in a visit from her beloved siblings I knew that things were seriously wrong.  The morning before she died I washed her and dressed her in her favourite Singing Hands tshirt knowing what a lift it would give her, I massaged her legs and brushed her hair and found a Thomas the Tank engine video on her ipad that she was asking for.  She liked to just have me in the room, just to know I was nearby.  While I was doing some paperwork she said  “night night  mummy” put her ipad down and rolled over to her side and drifted off to sleep.  In hindsight I know she was saying goodbye.  She really was not communicative after that .

Daisy Rose passed away in the intensive care unit of Great Ormond Street Hospital at 2.35pm on 31 January.  She put up a valiant fight but she and I knew her time had come.  She had her siblings and her mummy by her side and she knew how much she was loved.  I told her that it was her time to go and play with Daddy in the stars just as she had wanted to for the past year.

Daisy’s amazing legacy lives on .  Everyone single person who met her, who worked with her, who read her story who was part of her story will never forget her  from the doctors who continually scratched their heads wondering what was going on with her, to the nurses who were told frequently to “go home” , to her schoolfriends who are wondering if she is able to still use her wheelchair up in heaven, everyone  will remember Daisy and have their own special memories.

Theo, Xanthe, Jules and I (not forgetting Pluto) will remember a life well lived, surrounded by love, with happy memories .  Daisy changed our lives forever.  Without Daisy I would not have had a window into a world that I knew nothing about, I would not have found the strength and resilience that I did not even know I had.  The same goes for her siblings, they are incredible young people and I am so proud of them.  Daisy loved you all so much and you loved her and that is all that matters.

The house is empty, our family of six has become four but we are so grateful that Daisy, and Andy, were part of our lives.  They will always be part of our story.

Thank you my beautiful, sunshine, smiley, gorgeous, Daisy Rose

Thank you for the days."

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