The big brother everyone should have



In my last post ‘Summer of protection’ I wrote about how I want to stand by Livvy and endure this warm weather with her by wearing extra layers of clothing. I didn’t really mention Eddies reaction to the warmer weather, I guess I felt it needed its own post. My love for Livvy is ever lasting as her mother but to see Eddie’s love and concern for his younger sister is something to admire.

Eddie’s own understanding of living with xeroderma Pigmentosum is growing and developing with each passing season. I recall back to last summer when we got to the warmer weather, I remember being in school whilst all the children were out for morning break, the sun was shining down and sun hats were bobbing around in the playground, whilst recently used sun cream bottles lay on the carpet by the children’s pegs. A sea of white shirts spread across the playground and playing field as all children had left their jumpers in their class rooms. Livvy had stayed in for this particular play time as the heat was too much for her, I looked out trying to spot Eddie, I knew he was out there somewhere but knew it would be a task to spot him among the sea of white shirts. Then my eyes were drawn to him and my heart sank as I held the tears back. He was the only child in the whole playground with his coat on.

I knew why he had kept it on as he had told me a few days earlier ‘but Livvy has to keep hers on mummy so I think I should too, it’s not fair that she has to’ I made him promise me to take it off or he would just get too hot, he had reluctantly agreed. There was no logic in him overheating too, a bit like when my friend had asked me about me wearing tights in the hot weather, sometimes there is no logic. I guess Eddie, like I do, feels helpless towards Livvy at times and in our own way enduring the same as her makes her feel less alone?

I had a word with Eddie’s teacher and explained that he was only keeping his coat on because Livvy has too. She could understand his reasoning, I explained that I had already told him but he clearly was not going to listen to me. She went out and told him to take it off she didn’t give him an option and never mentioned that I had instigated it. He happily (almost relieved) went back to his classroom and hung his coat up before continuing to play.

He no longer wears shorts, he claims he looks silly in them, which he doesn’t, he just has no other reason to claim not to want to wear them, other than the truth which I don’t think he fully knows himself, he often wears long sleeve T-shirts even when the sun is at its warmest.

Just this week I sent him to school with sun cream on his arms and face that should have lasted all day, forgetting that he had swimming that morning. As soon as I picked him up he told me with a smile that the sun cream washed off in the pool and he hadn’t taken any spare cream to school so he just kept his jumper on when he went outside. I think this shows how his understanding is developing, last year he kept his coat on to feel some sort of affirmation with his little sister whereas this year it’s about protecting himself from the harmful UV rays. I’ve always been as honest as I can in our XP journey and have explained that any one of us could get skin cancer if we don’t protect our skin, we just maybe won’t know until we are a lot older, therefore it’s important to wear sun cream now.

For an eight year old to have such a profound understanding is remarkable and to be able to see that his actions now could have a direct impact on his health and well being in his adult years, not only to understand this but to take proactive steps to prevent it from happening I just find amazing. I think it tells its own story of how Livvy’s many surgeries have had an extreme and deep impact on his own self. He has seen the terror in her eyes for himself every morning of surgery. He has watched her sleeping off the effects of each and every one of her surgery days covered in scars, stitches, plasters, bandages and bruises. Taking her drinks and snacks as she lay on the sofa at home falling in and out of sleep as her body recovers from the ordeal.

Eddie has had to grow up fast and take on information that some adults would find overwhelming. I’m so proud of his resilience, the love and compassion he has for his little sister. He is the big brother everyone should have.


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