A beautiful gift of family time

Six years ago this week I was admitted to hospital for steroids to strengthen Daisy's lungs in preparation for her early arrival.  Up until that point we were a family of five, Theo was 7, Xanthe 5 and Jules 2 and we did normal family things - went on holiday, got babysitters in, did usual Saturday activities, ballet classes, football - all that changed at Daisy's arrival on 22nd December.  She was born by caesarean section, my first, (she was supposed to have been a home birth like her brother before her!) and our first Christmas as a family of six was spent with me recovering in hospital, Daisy in intensive care and Andy trying to keep the children's spirits up at home.

Much as our family feels so complete with Daisy, life has never been the same since her birth.  In many ways we have changed for the better, we don't sweat the small stuff and have become incredibly adaptable.  At the same time however we constantly change plans - trips and holidays get cancelled at the last minute, birthdays are celebrated in hospital rooms, the children miss out on treats and during long hospital stretches the family is torn apart and they rarely get their parents in the same room at the same time...

So the trip to Florida was so important in so many ways - mainly because it was a big opportunity to give the whole family a time out, an opportunity to be a family and most importantly to have some fun!

And, boy did we have fun!!!  We started off our adventure at the Gatwick Hilton where we met the other families and Caudwell Staff, Volunteers and Medics joining us on the trip - bless her, Daisy thought that was Disneyland - she was beside herself with excitement.

The flight was not too bad considering Daisy had her TPN running and needed her stoma bag emptying every hour -

We stayed at the Give Kids the World Village. A wonderful place where life limited and terminally ill children can enjoy a week away in the Florida sunshine.  Our villa was like something out of a storybook, but for me the best thing was that everything was all on one level, no stairs, no lifting - fantastic.

Since Daisy arrived nothing suprises us anymore, so we should have predicted that we would meet someone we knew while we were away.  On our first morning at the Village a family came into breakfast with a little girl who was Daisy's double, there was no doubt she had Costello Syndrome (the hands are a big giveaway), amazingly Cintia Cuperman, Valentina's mum, and I have corresponded online.  They were leaving as we arrived but not before we took some pics of the two girls together in their Minnie Mouse ears.

While in Florida we visited Disney's Animal Kingdom, The Magic Kingdom, Hollywood Studios, Universal Studios and Seaworld - the whole experience was truly out of this world.  As a family we had never ever done anything remotely like this, the nearest was a couple of trips to Legoland, so we just embraced the magic and suspended reality!  Andy and Theo enjoyed the rides, Xanthe enjoyed the shops, Daisy loved meeting all the characters and getting their autographs and Jules just loved everything.  There were so many highlights, shows, parades, fireworks, characters, rides, experiences....words just can't describe how fantastic the holiday was.  We all laughed so much and had so much fun, we also realised how little time we had spent together as a family unit over the past two years especially and it made us determined to try and make sure we get more time out together.

Not only did we have the whole theme park experience, staying at the Give Kids the World Village was an experience in itself - icecream for breakfast, the wish fairy visiting our villa each day, the playground opposite the villa, the train that Daisy got to drive and the most special thing, Daisy's star being added to the stars placed by thousands of other children in the Castle of Miracles.....a little piece of Daisy will always be in Florida now.

This whole trip was down to the wonderful, wonderful people at the Caudwell Children's Charity.  On our journey with Daisy we have met some very special people and the Caudwell team are right there at the top - we know Daisy is a complicated child and without Caudwell there is no way we could have made the trip as a family from a practical, financial or medical aspect, but not only did they bring Daisy out to Florida, 22 families were on the trip, all with highly complex medical needs - nearly half of the children were in power chairs, some had ventilators, Caudwell does not shy away from making sure that the most complex children get to experience the magic of Florida.  Sadly one young lad passed away while on the trip bringing home to all of us parents how fine a line we tread and how lucky we were to have made it this far...

It has been a few weeks now since we have been home and I still feel I have Florida sun for energy, I needed it last week when Daisy's hickman line broke and she had an odd allergic reaction to her TPN calling for a Saturday night sprint to A&E and a few days in hospital.

All around the house are reminders of our trip - Micky Mouse toys, photos, souvenirs .....the magic of that experience has got under our skin and changed our family.  We have beautiful photos where all four of our children have smiling happy faces, at long last we have photos with all six of us in.  Give Kids the World even arranged for Santa to visit while we were there......but the best thing - we got to meet Mickey and Minnie!

 I can honestly say my batteries are now back to full charge - the Caudwell Charity gave us the most wonderful gift this year, the chance to be a family again, we are so grateful to them .


  1. Hi, Have just followed the link from Caudwell on facebook. I passed a couple of surprisingly cold hours chatting to you while watching the night-time parade,before having to dash back to the bus with a very upset Tegan. I have loved reading your account of the trip and also feel the need for some Florida sunshine in theis snowy weather. You describe so well situations that are real for so many of us families with special children. It was such a joy to have been part of the experience. I wish Daisy a very happy birthday for the 22nd and to all of you a healthy and peaceful Christmas.

    Nicki Harvey

  2. Hello Stephanie,

    I've been following your blog for a while now but can't remember if I've commented before.

    I was on TPN from 6 months old (following an intussusception) til I received a small bowel, liver and pancreas transplant four years ago aged 16.

    About 2 and a half years ago the Make-A-Wish foundation organised for me and my family to have a holiday to Florida and we also stayed at GKTW. I was really pleased to read that you had such a great time :)

    Take care,
    Moll x x