It probably seems like I’ve abandoned my blog recently. Trust me when I tell you it’s not because I’ve lost interest or because it was a fleeting hobby that’s about to drop off my priority list. It’s because life is so bloody chaotic and I am just so bloody tired.
I suspect this is a feeling that all CF parents experience. There’s what physically needs to be done every day when all is well (inhalers, nebs, physio, PEP, creon, losec, Aquadeks…), the constant worry that eats away at your sanity, the normal things that every family with young kids deal with – cooking, cleaning, bills, washing, school runs and the rest. Throw work in on top of that and you’ve got a right pressure cooker.
If this sounds like a pity me post, I truly don’t mean it to be. But if I’m honest with myself, a lot of the time I expect myself to be a bit of a machine. I’m a perfectionist and I just don’t like letting balls drop. Eva never misses a treatment. I never miss a work deadline. I travel in and out of the city four days a week to work while a huge part of me aches to be at home. But I have responsibilities. I suck it up. And if I’m honest, I really enjoy working when the wheels are on the cart.
But the wheels aren’t super glued on. And I’m not a machine.
That’s why I’m writing this this evening. To remind other CF parents that it’s ok to have a meltdown every once in a while. CF is a big deal. In fact, it’s a massive deal. And while we’re not the ones who have it, it eats away at our insides. We’d take it if we could and we’d do anything to make it go away and leave our kids alone.
In an emotional blur that’s far from my norm, I recently spent two weeks crying the whole way home in my car every evening. Not understanding what the hell was wrong with me. Eva wasn’t in hospital. My son was fine. My husband too. But I was tired. Tired of being strong. Tired of putting a front on. Tired of keeping so many damn balls in the air.
I think maybe it was a delayed reaction to Eva having had two hospital admissions in three months. Maybe it was me finally accepting that this thing isn’t going away. Maybe it was guilt that I’m not with her all day every day.
I don’t know what it was. But it hurt like hell. And it took a lot of tears to move past it. I saw a counsellor; I talked to my parents, to my husband, to friends. And the only advice I can give to any other parents feeling like this is to do the exact same thing. Please don’t bottle it up. Pease talk to someone. Talking about how you feel makes you a strong person, not a weak one.
If I’m honest, I feel that overwhelming, suffocating feeling raising its head more frequently than I’d like it to. But I figure if I acknowledge it instead of trying to swallow it back down, then it can’t eat me up.
So please talk about your feelings. And when things are just too much, look into your child’s eyes and remind yourself that your bond will get you through anything that this CF life throws at you.
But most importantly of all, give yourself a break – you are not a machine.