Hola! We're just back from a wee sojourn in Southern Spain, recently enough that our collective skin tone has not yet reverted to our natural Scottish light bluish tinge...
While we were there, we headed off on a day trip to the Alhambra in Granada for our token bit of culture. And it is indeed a stunning icon of the medieval Moorish culture of Southern Spain. Our guide pointed out a feature of it's decoration that got me thinking a wee bit (oh no not again, I hear you cry!) The outside of the Alhambra is quite plain, but the inside is beautifully decorated with intricate designs - as our guide put it, they "kept it to themselves"...
It made me think about how much is to be gained from sharing our creations - be they arts, scientific discoveries or even just daft blogs by depressive weirdos! The thing is, I suppose, that you don't know what other people will gain from or do with what is shared - in work, for instance you can share something that you have learned and save your colleagues from having to discover it themselves. Another way that I have seen this bear fruit is by sharing our experiences with Christopher, we have hopefully given other TOF parents, who are earlier in their journey, some idea of what they can expect. I know that we have gained from the experiences of others.
I suppose that there is a risk sometimes of "oversharing" or perhaps becoming self-obsessed (which seems to be quite common these days) but I think if you can foster a sensible "interrnal editor" and a reasonable degree of self-awareness, hopefully you can realise what to share and when to have as positive effect as you can. (Or you can put it in a blog that people can read or ignore as they see fit!)
The "Spanish Minute" idea is another thing that I encountered on holiday - it is like a less extreme version of "manana"- as in "the show will start in 5 minutes... 5 Spanish minutes, that is". I remain unsure of the exact correlation between "Spanish" and "normal" minutes but I am pretty sure that it is always a ratio greater than one!
The past couple of weeks have been quite hard for us, I think. Sleep has been a very scarce commodity in the Rennie household. And it is nothing to do with my depression or Christopher's TOF issues, but something that is probably way more common than either of those.
I am talking about the fiendish scourge that is eczema - the demon itch that can drive even the most disciplined soul to scratch themselves in a frenzy. I, myself have suffered from skin complaints, as has Freya - we both know the impossibility of resisting the urge to tear at your own skin until you bleed in an ultimately futile attempt to make that damned itch do away. So it is difficult for us to tell Christopher to stop scratching, though we must.
It is also difficult to come into his room at some obscure hour of the night, half asleep and nerves shattered by the howling that has woken us, to find him writhing about on his bed, crying unconsolably and feverishly scratching at himself, often with blood all over his legs. We seem to have every lotion, potion, cream and ointment that exists from the simple emollients to the fierce steroid creams and the positively vile icthopaste bandages. Many nights he goes to bed bandaged neck to ankle, looking like an extra from a b-movie. It is no joking matter, though we try to make light of it for him.
The hardest thing though, is hearing him say "I want to give my body to someone else" or "I don;t like my skin, daddy". These are not the sort of things that you want to hear from anyone, least of all a four year old. Once, the blood is cleaned away, the creams and bandages applied, and the tears have been soothed away - something that Freya has a particular genius for - then Christopher starts to reassert himself over his skin, and he talks about how he doesn't like the creams, but he knows that they help his skin.
I am weak compared to my boy, but his strength of character lends me strength - coffee will push the tiredness away long enough to get the working day over - but my beautiful family are my true love in this world. "Beauty is only skin deep" they say, but Christopher, to me, is beautiful to the core.
