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  • Summer Living

    23 Jul 2013

    The summer weeks have been consumed with managing Muir, his carers and lobbying Governments - but all of these are intertwined.

  • Just a Thought - With Hindsight!

    21 May 2013

    Yes, hindsight is a wonderful thing but I wonder just how many reading this, who know what I am talking about, will realise that I just might be right. Perhaps the real question is, how many will admit that I could actually be right. I have always kept an

  • A poignant moment - and time to let go?

    3 May 2013

    I am reminded of my open letter to Muir, written on his 14th birthday as I sat beside his hospital bed and he was was recovering from surgery. The memory is prompted by a ‘conversation’ I had with Muir last night when I visited him in Residence where he l

  • The 'Public Pound'

    29 Apr 2013

    It seems to me that local authorities often use their obligation to spend the 'public pound' wisely to suit their own purpose. Is it a greater priority for local authorities to protect the public pound than it is to ensure that the needs of their most vul

  • Social Services - WHO DO THEY THINK THEY ARE?

    22 Apr 2013

    Today should have been a good day but following a telephone call with Midlothian Council Social Services, it is not. Muir, our 16 year old son profoundly damaged by epilepsy, is a 'Looked After Child' because he is in residential care four nights a week a

  • On Ten Years

    13 Mar 2013

    It is hard to believe it is ten years since Jonny and I established the Muir Maxwell Trust, in our son's name, to provide practical support to children with difficult epilepsy and their families. Whilst we have a deep routed passion for our cause as a con

  • Mother, Wife & Fundraiser - In That Order!

    22 Feb 2013

    Mother, Wife and Volunteer Fundraiser, in that order! A testing combination. I wonder when Victoria Beckham refers to her role as Mother, Wife & Fashion Designer, if she ever has the latter role cast up at her as often as I do!

  • Our First Epilepsy Alarm

    14 Feb 2013

    We purchased our first epilepsy alarm for Muir when he was four years old. It cost us nearly £1000.

  • I Remember!

    8 Feb 2013

    I remember when Muir's epilepsy was out of control. I had always been a holistic mother raising my children on home made organic baby food.

  • "Muir Help Mummy"

    4 Feb 2013

    Jonny and I fell out the other day, an unnecessary, unjustifiable outburst about the curtains in the kitchen.

  • Oh Where Does All The Time Go?!

    29 Jan 2013

    Yet again I am chasing my tail in the run up to another Muir Maxwell Trust fundraising event. However, this is not just another fundraiser - this is MMT’s 10th Anniversary Celebration

  • Here We Go Again!

    22 Oct 2012

    What is palliative care?

  • Mind the Gap

    25 Sep 2012

    Mind the gap! What gap? The gap in services for families struggling to cope with their child’s epilepsy - that glaring hole that no one can see except us, the families who are struggling to cope.

  • High Days and Holidays

    29 Aug 2012

    In life we all have choices but in certain circumstances those choices are limited and some are forced upon us.

  • The Moral High Ground

    15 Aug 2012

    Who does it really belong to? We all feel the right of ownership at points in time and exercise our self-perceived right to claim it.

  • 'Transition'

    6 Mar 2012

    I have never understood the jargon that goes hand in hand with raising a special needs child. Many of the epilepsy terms I don't understand either.

  • These Difficult Times

    2 Feb 2012

    Times have changed, especially for the charity sector.

  • Blogging!

    9 Jan 2012

    The great thing about a blog is that you can just blog. It's your own so in theory you can say whatever you like.