At times the sadness that comes with having a daughter with XP is overwhelming, the feeling springs up from nowhere but leaves me hollow and empty of happiness. It can be a passing thought or at times it can stay with me for a day or a week before it leaves till the next time. I know it’s only a feeling and it has no real bearing on our world, I never let anyone know how I feel, it’s much easier to plough on through until the happiness returns.
There’s no reason for my sadness, it’s just part of who I am now. This past week I’ve been so full of cold I’ve not been able to run, which is when I usually get all my thoughts together in my head. Having an hour every other day of running helps and when that stops I feel the sadness creeping up on me. My thoughts become free to roam in my head, I have no time to stop them like I do on a run, they build up and spread, one thought feeding another.
When I do stop and think about why I’m sad I’m not sure that I can tell you, it’s just a feeling. I’m sad for all the things I know both Livvy and Eddie have to go through in order to have a ‘normal’ childhood. In some ways they aren’t aware of what lies ahead and the hurdles that they will have to face together, they can remain in an innocent care free place but I know what lies ahead and the hardship we are all going to have to face in the future.
I think it’s this time of year, spring time, I’ve written before about it being the hardest time of the year and it truly is. I hear people planning holidays in the sun and wishing the spring away so they can have lazy summer days, walking in the summer sun, having picnics and eating ice cream. I know it’s not intentional, but It feels like everywhere I turn at this time of year is a slap in the face for my girl.
I’ve noticed a change in her over the weekend, a sadness that I hadn’t noticed before. She may be just starting with this nasty cold I’ve had or it may be something deeper inside a feeling of restrictions starting to move in on her. If the spring makes me feel so sad maybe as she gets older and understands what Spring means it to will be a time of anger and sadness too.
Whilst out walking the dog this morning I told my friend that I’m feeling down but I didn’t know why. She said to me ‘just remember everything is temporary’. And it is, nothing’s changed from last week when everyone was happy, it’s just a feeling that will pass, it doesn’t mean anything, it doesn’t make me a less loving mummy and it doesn’t make Livvy any different from last week.
I can’t change XP or the skin cancers she has, I will never be happy about it, but I am happy that she’s my daughter and I’m happy that she copes so well with XP. I’m happy and grateful that I’m the one that’s been entrusted with her, it could have happened to any one of my friends but it happened to us and I will continue to embrace XP and the world in which we now live, we have no other choice, and if that means getting through the sad days that come and go then that is what I will do.
A feeling is very real at the time of feeling it but it’s not real, it’s not a reflection of ones life it’s just a feeling which could be brought on from a song on the radio, a look from a stranger or entering a second week of a cold and no running, whatever it is it’s not real, it’s a feeling, a feeling that will pass, a feeling that is temporary, everything is temporary.