Yesterday I went out of my comfort zone and made a brief appearance on national radio. It was a a conversation around 100% attendance certificates that made my ears prick up as I reached for the volume button on my kitchen radio. A debate on whether children should or shouldn’t be awarded at the end of the school year if they have achieved 100% attendance. I opened my lap top and got to work writing a pretty good and coherent email which explained my view point with regards to being awarded for great attendance when you live with a condition such as Livvy does which requires many hospital appointments and surgery in order to affectively stay alive and well.
I thought they would read out my email as they do with many of the comments that come flooding in, however 15 minutes after pressing the send button on my email my phone rang, it was a member of the radio team wanting to know if I would like to talk to Jeremy live on air! Yes that’s right my dear readers here in the UK it was the Jeremy Vine show!!!!!
I had not long got home from a rather difficult (due to the heat) 4 mile run, I was just out the shower sat with wet hair and a towel round me. My mouth went completely dry as I said sure I’ll talk to Jeremy! What was I thinking? I had a head ache starting possibly from not hydrating enough on my run as I sat on hold.
I said my bit, although I can’t tell you what I said as it was all over so fast I think I just went on auto pilot whilst willing myself to wake up from this nightmare I had found myself in. I think I went down the route of being rewarded for great attendance is all good and well when you are reasonably fit and healthy however it is unachievable for many children who live with a life long condition which requires regular hospital visits.
As I put the phone down to Jeremy I straight away phoned my friend with shaking hands, I knew she was at work and the unwritten rule is I only ring her at work if there is a minor emergency going on at home. She answered the phone with a ‘hi my love, are you ok?’ She was greeted by me calling myself some unmentionable names and laughing as I told her what had just happened.
The funniest part of the whole thing was that later that same afternoon I was sat in the school hall for the end of year awards ceremony only for Livvy to be called up on to the stage and presented with an attendance certificate, the head teacher did a little speech about how sometimes children have to go to hospital and will have to for the rest of their lives and he has taken this into consideration when looking at attendance. I didn’t know where to look and wanted a hole to appear in the ground in front of me so I could jump down it.
I have been reassured since that Livvy was always down to get a certificate and had nothing to do with my short appearance on national radio, I have no doubts about this and I am pleased that Livvys condition has been taken into account allowing her to have her first ever attendance certificate, it’s a far cry from the blog post I wrote this time last year.
However there is someone else in this situation that has not been considered, I feel like I want to change the tone of this blog post as it’s been quite light hearted up to now, but there is a far more serious side to this story which has a much bigger impact than if Livvy had not been presented with a attendance award.
Eddie, Livvys older brother, the forgotten sibling yet the one that lives as much with XP as Livvy does herself, he also has a unique up bringing as a direct result of being a sibling to a child with XP. Eddie, as I have mentioned before in my blog, attends many of Livvys hospital appointments as he can, he travels with us to London and has the opportunity to talk to all members of the XP team for his own reassurance. He’s even had some of his moles checked by Livvys consultants, imagine if you will being 6 years old when your sister is diagnosed with skin cancer, the learning and understanding that takes place is unimaginable and rightly so he has questioned moles on his own body, questioned why he hasn’t got XP and questioned if his only sister is going to die.
Imagine sitting in the awards ceremony and your sister gets called onto stage to be presented with a certificate when you know yourself the only reason you’ve not got 100% attendance is because you went to those hospital appointments which have not been counted for your sister but have on your own attendance.
I’ve been told that Eddie did have some time off due to illness at the start of the year, I’m not denying this but what I will point out is that so has Livvy, not all her absences where as a direct result of XP. I also understand that you can never make everyone happy, but when the school approach me on my radio out burst don’t expect me to sit back and listen as there is always more than one side to a story and I believe yes the school has improved from last year and considered children like Livvy but there is also a hidden group of children that are often forgotten, I have spent years being Livvys voice but I’m also Eddies mother and I will be his voice too.
I feel its so important that Eddie is involved in Livvys XP journey, one day Phil and I may not be able to hold her hand as she has another skin cancer removed and I would like to think that if this were the case than Livvy can call her older brother to be there and hold her hand. Including him and making him feel part of this whole crazy world which we have found ourselves in is paramount to this relationship, I don’t want resentment creeping in from either Eddie or Livvy and I feel I have done all that I can as a mother to cement this relationship, the last thing I wanted was for it to be ripped up on stage yesterday.
Apologies and good intentions are all very well but don’t pull me up on my comments without expecting to hear the roar of a mother protecting both her cubs.