4 years of living with XP

Today marks 4 years of living with XP.

It was four years ago that I got ‘that’ phone call from Livvy’s consultant dermatologist confirming that my daughter aged at the time just 4 years old had skin cancer and most probably Xeroderma Pigmentosum. Less than a week later my little girl had her first surgery to remove skin cancer from her face, the first of what has resulted in a total of 11 surgeries all to remove further skin cancers from her face and body.

When I look back it doesn’t feel like its been four years. Some days it feels like we are still coming to terms with our daughter’s diagnosis, still trying to find our way in a world that’s not made for her, in a world where at times it feels like she doesn’t belong.

One thing that I just can’t get used to is the constant looks and comments that come with wearing her full UV protection, I will never get used to or accept people pointing at my daughter, laughing and making unjustified comments. I just can’t understand society’s rationale when it comes to pointing at a child in public because they may appear different.

A perfect example of this happened over the weekend, we as a family visited the RHS flower show at Chatsworth. As we were stood looking at a stand a man stood to my left was pointing at something, I didn’t take much notice to start with other than being aware he was invading my personal space, anyone that knows me well knows I like my personal space and cannot tolerate anyone, let alone a stranger, getting so close to me! With this I softly pulled Livvy away from the crowded space we had found ourselves in, only for this mans gaze to follow us as he turned to a lady he was with passing comment on Livvy’s attire.

To be fair he didn’t say anything overly offensive but I felt an overwhelming need to let him know how rude and ignorant he was being. As the years have drifted by I hope I have become less aggressive and protective of my daughter from the comments that come with living with XP but every now and again I find myself standing in a field full of strangers and my heart is back to Friday 13th June 2014, unable to move on. The pain, hurt and confusion that I felt on that day came spilling out as I firmly informed this particular man that it is rude to point especially so at a child.

What amazes me, more than the initial rudeness, is the extreme shock on certain individuals faces, often when I explain, politely or not, the reason why my daughter is wearing a face visor the reaction is often very apologetic, but every now and again, as was the case at the weekend, the person is shocked and outraged that I dare call them rude or offensive. Surely if I’m offended by anything a person says or does then that counts as being offensive? Yet this man was adamant that he was not being offensive? To the point where he started raising his voice at me! Yeah, I know, how does that work? He felt so outraged that I should suggest his actions had caused any upset or offence to either me or my daughter. Its not the first time that I had experienced this reaction to me politely informing someone that to stare and point is considered rude and upsetting.

It’s astonishing the way some people within society put themselves on a higher platform than the rest of us which in their twisted way of thinking allows them to be openly offensive to anyone that doesn’t fit the ‘normal’ mould that they have created in their own minds.

Four years on from diagnosis I do feel for the most part we have accepted our daughter’s diagnosis, she copes very well with her condition and manages the day to day struggles well with the help of us, her family, and her key worker at school. The number of new skin cancers appearing on her skin has dramatically reduced over the past months showing that our extreme UV avoidance is starting to pay off.

Accepting Livvy’s condition does not mean accepting the pointing, the comments and the stares though. We will not hide away, we are proud of our daughter and all that she has achieved in the four years since diagnosis, and on those occasions when I find my heart is back at Friday 13th June 2014 my only advice to anyone that finds themselves at the end of one of my out bursts of frustration is look beyond the protection, look beyond the condition, she didn’t ask for her genetic code she is simply trying to find her own path in the world as are we all.

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