Fear and (self) loathing

I realise all parents live with a certain degree of fear. I just wasn't prepared for the level of permanent anxiety that feels like it pervades every aspect of my life when I became Emily's parent.
Since Emily's diagnosis of Epilepsy, I feel like a crazy person waiting at a phone for the next bad call to come through.

Dramatic, I know, I am writing this at an all time low - hardly any sleep for nights, and hating myself because she is currently out with her grandparents, and I find myself watching the clock, counting down the minutes until her return. My countdown is based on borderline dread that when she gets back, my overwhelming sense of fear walks through the door with her. And along with that, any sense calm, freedom and peace of mind.

As a parent you are responsible for your child's life, but as a parent of a non verbal special needs child this responsibility feels like it is ten-fold. Emily is having breakthrough seizures, and whenever something like this happens, I feel like there should've been something I should have done differently. It makes me call into question all the decisions I make on her behalf. It makes me call into question my fitness as her parent, guardian, spokesperson and fighter-of-battles. Basically, I feel like I have utterly failed and let her down.

I know I love her and that I do all I can for her but am I doing enough?
Will it ever be enough?

This feeling too will pass but my determination to make her life the best it can be for her, never will.

Answers

The question could be why?

Why Emily? 

Why us?

And the only answer I can live with is that she chose us. There was always going to be an Emily Bean. So she chose to be our Emily Bean. 

Walking this road with her brings so much joy. But on nights like tonight,  sitting next to her as she sleeps in her hospital bed, just brings sadness and anger. And more 'whys'.

One of the biggest lessons I am learning is that a lot of my questions can't be answered. And if you know me, you know how this does not work for me. I am a problem solver. I keep at something until I have fixed it or at least made it better than when I found it. But I can't solve or fix what is wrong with Emily. And this breaks my heart. And on some days, breaks me. 

Okay,  so if Emily chose us, and I accept that 'fixing her' is not what I should be doing, then am I asking the wrong question? 

Maybe my question should be 'is she happy' or 'is she loved' or 'are we doing all we can'?

And, the answer is yes. 

And I can happily live with that.