Why?

Why?

It’s just one word, but it asks a lot.

Why?

I think that probably everyone who is reading this blog has had a moment in their lives where they have felt something is unfair. Where they have asked ‘why me?’, ‘why us?’….. just….. ‘why?’

And although I know how lucky we are and how so many people in the world have a lot more hardship than us – which in turn makes me feel incredibly guilty for feeling like this – I still haven’t been able to stop myself asking ‘why?’. I’ve struggled with it. I’ve sometimes found myself consumed by it.

Why?

Why did our little embryo have this super rare genetic mutation?

Why does Louisa have to go through all of this?

Why does Louisa have to struggle?

Why is she in pain?

Why can’t I make it better?

Why can’t we do ‘normal’ things?

Why her?

Why our family?

Why?

It’s not fair.

Some days I find myself with a positive outlook. I like to think that there is a higher power out there that chose Louisa, that chose us. That the answer to this ‘why?’ is bigger than anything I could ever understand. That it is all good. That there is a greater purpose and I have to trust the journey we are on. I often get a lot of comfort from thinking like this.

Other days I feel pure anger. The ‘why?’ consumes me. I want to stamp my feet and scream. Sometimes I actually do that. Some days I hate the world and everything that makes Louisa’s life harder. I despise everything that causes her distress and pain. I’m bitter and full of hatred for all that is hard.

And as the years go on, I’m learning that I’m allowed to feel all of these emotions. I can be happy and sad in regards to the ‘why?’. They can coexist. I don’t have to be one way or the other. The journey I am on in raising the most beautiful little girl is fluid. That on the days when Louisa has a really hard time – and let’s be honest when she has a hard time so do I, albeit in a different, emotional way as I try to help her through it – I’m allowed to feel mad and sad. Being angry for her is ok – as long as I channel it productively. And that on the good days, I can feel grateful and blessed. One emotion doesn’t discount the other. They are all relevant. Everything I feel is valid.

I guess the most important thing I’ve had to remind myself of lately is that I will never find an answer to the ‘why?’. And even if I did, it wouldn’t actually make Louisa or me feel any better. It wouldn’t change the here and now. It wouldn’t change anything. It wouldn’t make Louisa’s day to day life easier. I’m learning that focusing on the ‘why her/ why us’ pity party I sometimes have with myself is meaningless and rather it is the way I react to the situation that really counts. By wasting time on the ‘why?’, by letting it consume me – it serves no purpose other than to make me bitter.

I’ve also realised that rather than only asking ‘why?’ when difficult things happen or when things don’t go to plan, it helps to think about the ‘why?’ when things are going well, when things are good, when things are great. For me, this puts life into a very different perspective. And perspective is something I know grounds me and reminds me how privileged I truly am.

I know I need to flip the ‘why?’.

Why?

Why do I have a roof over my head and a fridge full of food?

Why do I live in a safe environment where my children are protected?

Why does my daughter have access to an incredible school, free healthcare and people who love her and care for her?

Why does Louisa have equipment that improves her quality of life?

Flip the ‘why’.

In all honesty though, I know I can’t promise that I’m always able to flip it. It’s foolish to think that I am full of positivity and that I am able to quickly accept everything that comes our way. As much as I want to be that person, I’ve realised that I’m just not – and it’s during the difficult chapters the negative ‘why?’ has a tendency to stay with me.

On the really tough days, when sleep hasn’t happened, when we are worried about Louisa’s health or when Louisa is in crisis and I start wrestling with the ‘why?’, I now know I have a choice. By acknowledging it and choosing to only sit with the negative feelings for a short amount of time allows me to let go of the anger that used to consume me. Flip the ‘why?’.

I am choosing to acknowledge the reality but focus on the light, the love, the happiness and the joy that my life is filled with.

And that’s a much lovelier place to be.