Hope is both the ointment and the salt on the wound of parenting a child with a rare condition. In the wee hours of the morning as you soothe another of their aches or fears, when you give your address for another emergency services call or another test result comes back inconclusive, when another doctor or specialist tells you “we’ll just have to wait and see” – they are the times when all you have to prop you up is hope.

But they are also the times you berate yourself for ever having hope in the first place. For allowing yourself to think that this wouldn’t happen again. For dropping your armour and allowing yourself to dream a different dream even if only for a moment. We are forced to live in a world were all we have is hope, and yet nothing hurts us more. For seconds, or minutes, days, weeks, months or years on end in big ways and little we continue to hope, because for us, there is often little else left to hold on to.

Please don’t call it resilience. It’s not resilience. Resilience by definition is “the capacity to withstand or to recover quickly from difficulties; toughness.” We don’t have the capacity to withstand or recover quickly from difficulties – we don’t have a fucking choice. We can’t say nope, not doing meds today I don’t have the capacity. We can’t say, I’ll just let the feeding pump alarm for the 15^th time tonight because I have not yet recovered from the other 14 times I’ve already been up to unkink the line. We aren’t resilient, we are just in the thick of it hoping for a lucky break.

Hope is so important. But there are times, especially in those early months and years, where it feels dangerous. It feels like a void. You start to hate hope. You start to hate people who tell you to have hope. I rarely felt anger during those early times, I seemed to loiter more in the states of severe anxiety, functional freeze and hypervigilance. The times I do remember feeling anger were when someone tried to tell me in one way or another to just hope for the best. And let me tell you it was molten white hot rage. These well intentioned, completely out of there depth, people were telling me “you never know what the future might hold” – which to me meant “stop whining this will all be over soon.”

But I knew it wouldn’t be over soon. It would never be over. My daughter has a life limiting, life long condition. She wasn’t going to “grow out of it”. She wasn’t going to recover. The plaster cast of medical interventions wasn’t coming off in 6-8 weeks and we would carry on as normal. So no, I didn’t want to have hope. I wanted people to see the situation for what it was. I wanted someone to sit with me in the dark of the unholy shit storm my life had become and say, “Jeeze, it’s dark in here hey.” Just see me I silently begged. Don’t offer me an answer, because there are none – I’ve looked. Just see things from where I stand and tell me you understand why hope feels like such a poison arrow now.

Most people only had the best intentions, I know that now and I knew that then. I just had no capacity left to make concessions for them. I know they had the best intentions because those that didn’t just simply faded away. I think about that GIF where Homer Simpson recedes into the hedges because it hurts less when I frame it like that, but the truth is there were people I considered friends and others born as family who just faded away when things got hard. They’d spring to life when you see them in the supermarket and want to know all about the things and offer their thoughts and other dribble – but that was only because they’d been caught. Outside of that they didn’t give a shit. They didn’t have the capacity to show support, for a whole host of reasons that are solely their own, and so they disappeared from our lives.

The truth is that showing up for us would have been as simple as saying, “I don’t know what to say or how to handle this but I am here.” That’s all it would have taken, to just be there. Not afraid to sit in the middle of the mess and listen. The beauty of hind sight and having developed a severe allergy to peoples bullshit allows me to now see that the thinning of the herd was an important step for me. Blood is not thicker than water. Friendships are proven when the chips are down, not when things are good.

If you are reading this and you are in the hating hope stage let me tell you this, I see you. And I didn’t believe it either but there are lots of other people who see you too. Hope can heal, but it can also hurt like a mother fucker and balancing the juxtaposition of these things will be a balancing act you will perform for the rest of your parenting days. When we slide into hopelessness, and things become particularly dark and heavy you need to reach out. You need to tell someone. And if you do, and it just so happens that they are an arsehole and it does you no good, tell someone else. Please.

I’ve sobbed into the bath mat at 2am begging for hail of life’s blows to end more times then I would like to admit. I’ve opened my eyes to knowing I face yet another day as shitty as the one before. Sometimes even shittier. It’s hard. It’s relentless. And we are simply not wired to do it alone. We can’t fly. We can’t breathe under water. And we can’t endure isolation and despair on our own for extended periods of time.

I thought I was supposed to. That’s the honest truth. I thought that not being able to pull myself up was a reflection on my abilities as a person. I thought that taking time to talk about how it was all impacting me would be to the detriment of the care of my daughter. But it is not. It is essential  to the care of your child that you put your hand up. I am not about to tell you to take a bubble bath and sip a herbal tea like that is some sort of portal to fucking Nirvana. Bubble baths are lucky to be a quarterly or bi-annual thing for me. It just doesn’t happen. I would be happy to just pee when I need to the first time, and hella-fucking-luyah if I get to do it alone. But I am saying make a telehealth with a GP. Tell a mate. Don’t tell your oldest or closest mate if that’s not going to get you a result. Pick the person who gets shit done. Pick the person who will get you an appointment, who will sit with you while you howl and tell you nothing more than how shit it all is. I can’t stress enough how important it is. And I can’t acknowledge enough how you will need to persist more than you should have to. The mental health care systems in most countries are severely lacking – which is a bullshit scenario but I would have at a guess that you are no stranger to having to jump through medical hoops. If you need a professional bang down all of the doors until you get one. You are the exact type of person who deserves this type of care (spoiler alert – everyone deserves that type of care, but especially someone dealing with the complexities you are trying to navigate).

Be angry at hope for a while if you need to. Get it all out. Say you hate hope because of this. And because of that. Cry and slam a pillow. March back into the room and say “and another thing.” Process that shit, get it out of you. You deserve it a thousand times over.

And when you’re done and calmer, or at least quieter, ask yourself this question: How many of your reasons for hating hope are actually about you hating no longer having certainty or control?

I’ll say that again, and then let it sit with you for a minute.

Here’s the ragu of it all. Not having control over the health and development of your child is terrifying. It goes against almost every notion of being a caregiver that has ever been wired into us from when we were born. Our one job is supposed to be to keep them safe and nurtured. Then suddenly there are aspects to the reality of our child’s lives that are outside of our control. Despite our best efforts, things don’t get better and sometimes they get worse.

Hating hope has an expiry date. Having hope doesn’t. There is a time and a place for thinking that hope is complete and utter bullshit. I think it’s a right of passage for parents and carers of kids with rare conditions. I also think it’s important to go there, to wallow in it a while if you must. But know that it must come to an end. Because when hating hope becomes hopelessness you are on a slippery slope. And slippery slopes mixed with likely unrelenting medical and caring demands is a scary combination.

Moving towards how to hope might feel fake at first. That’s ok. Stop and try again tomorrow. Maybe tomorrow it might just feel awkward instead of fake, that’s progress. But if after a period of weeks you still feel like moving toward hope is bullshit, please, please, please find someone to talk to about that. I cannot stress enough how important that is. The research on how detrimental hopelessness and despair are is frightening, and I don’t want that for you and believe me neither does anyone else.

We can’t run the race for them. We can choose the track, pump up the tyres or lace up the shoes. We can have teams on standby and have the rescue solution on hand but ultimately this is their race. We have no more control over the outcomes then we do over the weather. Things are at play here that are just bigger than us. Bigger than our love for them. Bigger than our wants for them to have a happy life. That’s just the cold hard truth. That doesn’t mean our efforts don’t matter. That doesn’t mean we don’t have an effect. All it means is there is a limit to what we can influence. And for the greater good for our children and for ourselves we need to decipher where that limit lies. You need to be able to say “I did my bit, I showed up, and now it’s over to you.” And the who you hand it over to part can be whatever or whomever you feel most comfortable with. The point is to know that it is beyond you and that is completely ok. See it does hurt to hope, but in the long run it hurts us more not to.

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