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Welcome to my World

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There is not a day in my life that goes by where I don’t wish I could clone myself, while this would be a somewhat scary prospect for my children it might make my life slightly easier.

I describe myself as a master plate spinner, I spend my days juggling multiple issues as a mum, some days more successfully than others.

I have four children, Theo, Xanthe and Jules are all teenagers now, Daisy my youngest is 11, but with the attitude of a teen. My boys have high functioning autism, they take medications to help their anxiety and to help them sleep.

Daisy has a very rare genetic condition called Costello Syndrome, she has an extreme form of it, she also has intestinal failure and complex epilepsy, she was not supposed to be this age, she has defied the odds.  She will probably not make adulthood.

My husband passed away just before Christmas, he had been diagnosed with incurable cancer 13 months previously.

I spend my time holding my family together. I am mum, nurse, carer, advocate, fighter, umpire, campaigner, writer, blogger, runner, swimmer, friend

Welcome to my world.

“Our world as we knew it was turned upside down.”

Our world changed when Daisy was born.  Prior to that, with the boys’ autism not diagnosed, our life was seemingly normal.  Andy and I both worked, high flying jobs with travelling, a house in the suburbs, a child-minder that seemed to have more disposable income than us and big plans for a loft conversion. The normal stuff really.

We didn’t have much to do with hospitals or doctors or anything medical. Daisy changed that. She was premature, she was poorly and her future was unknown.  To use a cliché, our world as we knew it was turned upside down.

The impact on the family was huge as we were thrown from our familiar world into a world of hospitals and systems and settings and complex terminology, language and jargon that there is no prior training for.

When you have a life limited child, particularly one as complex as Daisy all the things you take for granted as a family disappear.  Sitting together for a meal, holidays, watching a film, going to the beach, going for a swim.  These things are not possible when one of your children needs two hours of intravenous infusions at 6pm, who spends 24/7 on a drip connected to her Hickman line, tunnelled into a main vein in her chest.  When she has catheters and stoma bags, which can leak just when you are in the middle of a shopping trip, when you have to carry around an emergency syringe of midazolam, in case she has a long seizure.

I first heard the term paediatric palliative care when Daisy was 6 months old. She was referred to our local hospice, Shooting Star-Chase. They were, and continue to be a lifeline for us. The other lifeline is our wonderful NHS. The nurses, doctors, therapists and other specialists have never given up on Daisy. It is because of the care she has received over the years and decisions we made with our medical teams that Daisy is still alive today.

“The hardest thing ever was to ask for and accept help but we needed help if we were able to keep going”

As Daisy has grown and her care needs have become more complicated so the support we need has increased.  The hardest thing ever was to ask for and accept help but we needed help if we were able to keep going and keep our promise to make sure all of our children had the best shot at childhood.  The hospice gives us some respite within its limited resources but over the years the sleepless nights, the physical hard work, the complex medical procedures were taking their toll on my husbands and my health and a few years ago, when Daisy was 8 our community care nurses assessed us for a continuing care package.

Last year we really hit crisis point.  Andy, my husband and partner of 27 years became very ill, very quickly and following his cancer diagnosis spent a gruelling 13 months undergoing chemotherapy and radio therapy, he was no longer able to help with Daisy’s care and in fact needed a lot of care himself, overnight my workload double and my emotional resilience halved.

Sadly it took our family to reach crisis point, the terminal illness of one parent, escalating issues with my boys’ autism and Daisy’s deteriorating health meant that a robust and realistic care package was put in place to support me in giving Daisy the best quality of life.

You know and I know it shouldn’t be like this.  It shouldn’t take a crisis to trigger the support a family needs.  We will soldier on regardless but the benefit of joined up support for life limited children means shorter hospital stays,  and reduces stress related illness for parents.  With more children surviving and defying the odds there are more complex children, just like Daisy, being cared for at home.

“Families like ours should be empowered and supported to give their child the best care”

Our community nurses, hospice nurses, palliative consultant and social worker have worked hard to respect our families wish to ensure Daisy has the best quality of life at home and that I am supported in giving her that quality of life.  Daisy will be 12 next birthday and it’s taken as many years to get to this point.  I know from talking to my other friends across the UK that this is just not the case for everyone.  There are such inconsistencies in care and support, sadly the postcode lottery pervades and we special needs parents know that it is those who shout the loudest get the support.

I don’t have much spare time in my life as you can imagine, my idea of relaxation is to train for marathons and triathlons!  However I give as much time as I can to write and talk about life caring for a life limited child.  I want every child who is life limited to have the best quality of life and for their parents and carers to be properly supported in achieving that. This means consistent support and assessment across the UK, it means communication between services and it involves planning and co-ordination.  Families like ours should be empowered and supported to give their child the best care, but most importantly the best childhood they possibly can, without having to reach crisis point to achieve it.


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