So here it is, Valentine’s Day. As any of my friends will tell you I’m not all hearts and flowers, don’t get me wrong I love having fresh flowers in the house and I have many hearts hanging up around our home, what I mean is I don’t wear my heart on my sleeve. I don’t open up with ease and I don’t show my feelings often. It’s just the way I am and my friends and family know me and don’t expect anything different from me. So when Valentine’s Day comes round I see it as a guilt free mid week wine opportunity.
Phil, my loving husband, however is the opposite and will embrace a friend with so much ease and love. We are different in so many ways yet just alike in others. So when Valentine’s Day comes round each year, Phil will shower me with love as he does every other day of the year but on Valentine’s Day it’s just that little bit more ‘romantic’ or is it?
Does knowing that every other couple in love out there is having a romantic meal,whether it be at home or out in a fancy restaurant, on this day make it more special? I’m not sure it does. I know many people will disagree with me and love the idea of Valentine’s Day, I guess it’s my ‘not all hearts and flowers’ side of me coming out.
However I thought what better day to write about the love I have for my husband ~ takes a big gulp of air as heart starts to open! Make the most of it readers it doesn’t happen often ~ ironically I met Phillip online and this is where I’m choosing to write about him, some things do come full circle. It was the summer of 2003 long before the crazy world of social media we all know today. I was in my final year at uni and therefore spent many an hour in front of the computer researching or writing essays. How boring! I would sit there with no idea what I should write, looking through my lecture notes to find noughts and crosses games, my friend and I had been playing rather than writing any actual notes. My mind would wander and I found myself in a chat room, this is going back some years and I don’t know if such a thing still exists being a social media phobe that I am. Anyway we got chatting and got on amazingly, all be it through a screen, some months passed and I found I was talking to him more and more, waiting for him to come online, eventually we exchanged numbers and as they say the rest is history.
Back then children or even marriage was not on my mind, I was enjoying life and excited to see what the world had in store for me. Xeroderma Pigmentosum were two words that I had never heard of and if I did ever come across them why would I take any notice of them, they were nothing to do with me. How wrong would I have been! From day one I have been a carrier of a faulty XP gene, living my life ignorant of what the world had planned for me.
The science bit, I’ve sat in the genealogist office at St Thomas hospital and listened to the mini GCSE science bit about XP being an auto recessive gene??? Is it coming flooding back? I felt like I’d done my GCSE biology homework wrong and I’d been called in the teachers office to go over it again. Basically you can be a carrier of the faulty gene and it not affect you at all, you just carry on your ordinary life, that is until you come across another faulty gene carrier. How was I to know that not only I was faulty but so was this amazing man that I had met all those years ago. It could have been anyone that I got talking to in that chat room, or if I was doing my actual work I wouldn’t have met anyone!
We have a 4 in 1 chance of having a baby with XP and a 2 in 1 chance of having a baby that is a carrier just like Phil and I. And finally, a 1 in 4 chance of having an unaffected baby. (Bet you’re glad the science bit is out of the way, you can wipe your brow as I won’t be going back there, far too complex for Valentine’s Day)
So fast forward to today, I have two happy children and a husband that I wouldn’t change for the world. Of course I would rather Livvy didn’t have XP but if that means not meeting Phil and falling in love and building our amazing life together then I’m sorry if it makes me sound rather mean and self centred but I would rather keep all I have than change Phil for a none XP carrier. It would be easy to blame ourselves for Livvy having XP but I don’t, I’ve never thought about it in that way. She is a ray of sunshine in our shadows and she helps me to see how amazing this world is, I take strength from her smile everyday. Eddie is so protective and understanding of her needs but also mine when I do have an off day and find myself crying. Eddie never blames Livvy for my sadness nor do I, it’s just a feeling and we all have sad days, don’t we?
So today is Valentine’s Day and I’m celebrating my amazing husband and all that he puts up with, he can look at my face a know what my mood is and adapts his own behaviour to suit. He knows how I like my coffee in the morning but will tell everyone that I’m giving it up with a secret smile that only we know. He knows how to make me laugh in the middle of an argument, he knows I have a softer side that no one else sees and that makes me love him all the more. Medically as a match we are a dermatologist’s worst nightmare but to me we are the perfect match.