I step into the hallway of our house.
I take a deep breath.
I swear at the top of my lungs.
I startle the dog and he comes to check I'm OK.
Rosalie, also startled, laughs in the room I just left. She loves sudden noises. She has the best laugh. While it calms me a bit, I feel slightly guilty being relieved by the knowledge she will never repeat the word she just heard.
Why am I so angry?
I couldn't find her hairbrush.
Something so benign was the final straw for the emotions bubbling away over the last couple of days.
Why am I so angry?
I am the dad of a girl with a really crap syndrome. Seeing your daughter fit so hard from her epilepsy that she almost falls out of her chair, save for the strap holding her in makes you feel incredibly helpless. All you can do is stroke her hand and say 'Dad is here' until the fit eases up. Seeing your daughter throw up repeatedly through the morning so you aren't sure she has actually kept anything down, makes you second guess every meal you give her. Having a morning of both sick and fits, as I found out today, makes me rage. The result: yelling a word that a leader of a church probably shouldn't admit to yelling.
I'm not writing this for sympathy - I'm finding writing this quite cathartic. I also hope that what I've written so far and what I will write in a moment will be helpful to someone else.
The rage comes from a particularly acute sense of helplessness. We've maxed out Rosalie's epilepsy meds for the time being and she is still fitting. The fitting seems to be triggered by her being hungry. She has bad reflux and we ran out of reflux meds over the Christmas holidays - an oversight on my part. She is being really sick and is probably quite hungry having thrown up most of breakfast and struggling to keep food in. So she fits some more. This morning I was helpless, had gone through 3 muslins by 10am and was trying to find a hairbrush so that I could tame the knots of her post-bath hair before she threw up again.
I found the hairbrush. We got to lunch and The Wiggles on an iPad got a few more giggles. Lunch stayed down. Breathe.
What to do with this rage?
A momentary yell has a decent amount of catharsis to it. I'd recommend it, but probably choose your words and your location a bit more carefully than me.
I also have found the bible helpful.
The bible has some interesting prayers in it, especially Psalms. Psalm 88 is particularly one that I seem to find myself repeating the last line of:
My companions have become darkness.' Psalm 88:13-18
Other translations write that last line as 'Darkness is my closest friend'. That might not sound hopeful but I find hope in it. I find hope in that this book of books, written by multiple authors over several millenia doesn't ignore the fact that life can be really crap sometimes. The older I get and the more people I get to know, the more I realise you are lucky if you get through life without pain or suffering and then you die anyway.
Right next to Psalm 88, Psalm 89 starts:
'I will sing of the steadfast love of the Lord , forever; with my mouth I will make known your faithfulness to all generations. ' Psalm 89:1
I might rage but I know that even in this momentary pain and frustration, God has been faithful. The more I travel this road with Rosalie, the more I see a God who cares for those who suffer. Not only is the God revealed through the words in the bible one who cares. He cares enough to take on suffering by facing and defeating death. Even when he seems silent right now, that last sentence is an incredible promise based on the historical moment a man came back to life and proved himself to be God in flesh. Crazy story I know, but no less crazy than the alternative options in my opinion.
Even in the midst of the rage of helplessness, there is a longer lasting peace that goes beyond my understanding or explanatory powers at midnight. I know that Rosalie is His. She has her own little purpose and personality that we get to nurture and love. We get to look after her, hear her giggles and laughs and watch her grow. We get to be inspired by her as she pushes through challenges of communication and movement that we weren't sure she'd be able to get passed. I may be helpless, but that is the point where faith is all you have and resting in the one who created all things is the best place to be. I hate that my daughter suffers, and I hate that this life is full of suffering. And in part, that is why I rage. I place my rage in the one who can take it and deal with it. The hope in Christianity, as I've written elsewhere, is that this suffering will one day be no more and that is where I find my rest.
If you found this post helpful, let me know. If you want to find out a bit more about the hope I'm talking about, feel free to get in touch, I'd love to chat. Just an FYI though, Jesus doesn't make our lives easier but there is something about Him that makes living with suffering/helplessness/rage more hope-filled.