I’ve never written that sentence before and truthfully I keep deleting it and retyping it. Why? Because it feels wrong to talk about struggling to breathe when our children actually fight for their breath every single day of their lives. It feels almost disrespectful, because my lungs work perfectly. And yours probably do too. But I write it like this to acknowledge the elephant in many of our rooms – the thing parents never really want to talk about, the thing that stifles my breath on a regular basis. The big beastly thing called anxiety.
No, parental anxiety is not life-threatening. But it’s certainly debilitating. It stops you falling asleep. It wakes you up early. It kicks you in the stomach. It makes your breath shallow. It makes your heart panicky. It makes you hyper alert and jumpy. It makes your brain play tricks on itself. And it’s something we need to talk about more.
Mine appears to be something of a shapeshifter. Small and easily silenced at times, huge and darkly domineering at others. It rarely has an in-between presence, it’s either something I’m aware of and in charge of or something that has me crouching in the corner under its large looming shadow, while it sniggers at what easy prey I am.
Of course this beast exists because of the intense love I have for my daughter with CF. It exists because I am desperate to protect her and give her the best possible life. And with desperation comes vulnerability. Naturally, I want to shield her from my anxiety, because I want to fill her head with positive thoughts and empowerment. So I hide my own fears deep down in the pit of my stomach.
It’s a time of much hope, so I’m eagerly walloping anxiety with that hopeful stick on a daily basis. My family lives in what I think of as middle earth – our daughter doesn’t have a Vertex drug yet, but she’s eligible for the triple, so hope is blindingly bright on the horizon. We’re not in that warm space yet, but neither are we out in the cold searching. We’re ‘patiently’ waiting at the door, and starting to allow ourselves to dream of a limitless, longer life for her on the other side. It’s an incredible feeling, a pinch-yourself breakthrough moment to live through, yet until you have the medicine in your hand and see a positive impact on your own child’s health, you still have the fear that it’s just a dream!
Until that moment of metamorphosis, anxiety will probably still cause me to view door handles as biohazards, sneezing humans as Night Walkers, and large social gatherings as extreme sports. It will probably still sneak up on me some days and grab me my the neck, threatening to quash my positivity and break my spirit.
But I have the upper hand. Because I see it. I know it’s irrational. And I refuse to let it get the better of me. I have to remind myself that I can only control the controllables. That I have more to be grateful for than fearful of. That I can’t control the universe, but that I can control how I respond to it. That gratitude is an attitude and anxiety is an asshole.
Anxiety is real and it’s nothing to be ashamed of. Every cough swab, every blood test, every exacerbation, every time your child cries that they hate CF, will allow it to swell. But if you acknowledge it and talk about it, perhaps you can start to look it in the eye, beat it down to size and put it back in its nasty little place. Because while anxiety thrives on ‘what ifs’, there’s one thing that’s certain – your love is more powerful than your fear.
Bernie Martin
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