Skill Set for Normal
Dear Red Wine,
I have a question for you. Keeping in mind that I’m a CF Mum, and in the last couple of years we have been through the Cystic Fibrosis wringer, I want to know - what happens when you are normal? When things start settling down and go back to only ‘slightly crazy’ rather than ‘full blown insane life or death situations’ - How do you re connect with normal? Is it possible to re connect with normal? After such a long time fighting and fighting and fighting … how can you be the same person you were when you started the battle? Do you want to be the same person you use to be? Can you still exist and function?
We’ve had some CF battles on our hands but things are finally getting under control and ever so slowly improving. Unless some other completely bizarre, totally ridiculous, Australian Story worthy type of thing / event / incident happens (which is always on the cards) …. I will be a normal ‘ish’ Mum and human being for a while … and I don’t know if I can be. It’s so different. It scares me!
I have already started to have ‘normal’ symptoms. Yesterday, I was in a shop, looking for a birthday gift for a friend. I ACTUALLY had the time to look for a birthday gift for a friend in an ACTUAL shop. I NEVER EVER do that. And THEN, last night, I was driving in the car and I turned the radio on and I ACTUALLY listened to it and enjoyed it! The music didn’t rudely interfere with the precious little time I have in the car usually spent thinking and strategizing about what to do next in the ‘Great Battle of Cystic Fibrosis’. AND in the past two weeks I have ACTUALLY watched ‘mindless’ TV. Yep. I watched ‘OffSpring’ on TV! Me watching TV is as about as likely as hell freezing over. Who knows what will happen next!!!! Maybe I will talk to someone on the phone or go to the post office or …. OR HAVE A COFFEE THAT DOESN’T GO COLD …. something COMPLETELY CRAZY like that!!! Seriously exciting … but very scary at the same time.
To me, ‘normal’ might mean dealing with normal ‘kid stuff’ … like going to school, making lunches, doing homework, dance class after school and putting band aids on grazed knees. It might mean going out on a ‘mum’s night’ and having dinner or occasionally sleeping through the night … in a bed. It could mean having conversations … about …. Well I’m not sure what normal people talk about…. but I do suspect it hardly ever involves the cheapest place to buy Azithromycin. And maybe normal people read books or magazines that aren’t about antibiotic trials for eradication of Stenomontrophous Maltiphili or Pseudomonas Aeruginosa. Or … normal people might actually turn up to work on time! All of this just seems weird and foreign to me! I can’t quite wrap my head around it??!!
If ‘normal’ doesn’t involve investigating the consistency of your kids poo, sleeping on a chair for 16 nights straight with bright lights on, getting excited about the colour of mucous, knowing the name, purpose and dose rate of every single antibiotic and their ‘cheaper versions’ (oral, nebulised and IV), telling pharmacists how to do their job, having conversations about poo in public places, researching genetics, being proficient at administering glucagon needles, showing nurses how to hook up feeding lines, trying to figure out the population ecology of bacteria (understanding what bacteria will take the place of the one already in my daughters lungs after eradication and what antibiotics will either aid this or prevent it) all while writing a business case for solar micro grids for work (from a hospital room), juggling the needs of a non CF child and training to run a half marathon for a CF fund raiser while in hospital …………………. Then I am not sure I can do ‘normal’. I’ve lost the skill set! (Note to self – look under the couch for it. Ya’ never know what lurks under there).
AND THEN I scare myself even more thinking about the positive side of ‘what if’ with regards to the future of CF. What if that brilliant new drug (Orkambi) that treats the cause of CF (rather than the symptoms) became available sometime soon? What if my daughter took that drug and it worked really well for her? It is entirely possible that things would improve to a new level and I’d be left with more time to be ‘normal’. If things were ‘normal’ what would my excuse be for the big black bags under my eyes? What would I do facebook posts about …. Cute cats, Donald Trump and pictures of my meal served up at a restaurant? What would I talk about with my friends? Heaven forbid! I might even find time to shave my legs!!!!???? Okay … hyperventilating now … breathe … breathe … sip of wine … gulp of wine … okay …
How do ‘normal’ people do it?! They are AMAZING! But if they can do that incredible thing called ‘normal’, then so can I!
I can do this. I will do this. I will let the ‘symptoms’ of ‘normal’ wash over me. I will embrace it … for the good of my daughter and many other CF warriors …. I CAN DO NORMAL!!!! YES I CAN!!!!
But if you see me wandering around aimlessly looking dishevelled and with a vacant, glazed over stare on my face in a grocery store with ‘normal’ food in my trolley … please strike up a conversation about allergic reactions to PICC Line dressings…. It might just be the thing I need to snap me out of my state of confusion over how to do ‘normal’.
PS. There’s no such thing as ‘normal’ … is there?
IMAGE: Sonia, Evie (CF) and Liv doing a role play to explore what it might feel like to be ‘normal’
Sonia is a single mum with two daughters who she loves and adores. Her oldest daughter has Cystic Fibrosis. Sonia works in a high level role at a very fancy organisation, makes costumes for school presentations at 10 pm the night before, is a proficient multi-tasker (she can do physio, weird yoga poses, order medication on the phone, sort out a sibling rivalry issue, sip a red wine and burn dinner all at once). Sonia doesn’t believe in homework, reading school notes, turning up on time, using pegs to hang the washing out or paying bills by their due date. Her greatest achievement in life, apart from her two beautiful daughters, was being able to sleep 8 hours straight without being woken up to deal with a lost teddy bear / kinked feeding tube / crocodile under the bed / diabetic low way back in 2004. Sonia does enjoy a red wine in moderation, but contrary to her blogs, doesn’t recommend drinking too much of it.