When we were told our baby girl had Cystic Fibrosis four years ago, I distinctly remember the reassurances offered by the Nurse Specialist on D-Day (Diagnosis Day) – she’ll go to school ‘as normal’, she’ll do sports ‘as normal’, she’ll do everything ‘as normal’. But this was 5 minutes after a discussion about how life expectancy was only around 30 years of age. Huh? What had I missed? How do you go from ‘as normal’ to no longer with us? It wasn’t intentional, but it made it sound as if a switch would be flicked on her 30th birthday. I don’t remember much else about the day other than the blur of tears and disbelief, but this contradiction has always stuck out in my mind.
Of course the Nurse was only trying to offer comfort and and consolation to devastated parents who barely knew what Cystic Fibrosis was, let alone what it meant for their family’s day-to-day life. So this is not a criticism of care or intentions (the nurses are like second family to us now – they are carers, friends and therapists, all rolled into one); instead it’s an examination of what a ‘normal life’ actually means.
See, it’s wonderful to put a positive spin on it and say that despite your child having CF, your family still has a ‘normal life’. I appreciate why people say it and most days, I try to convince myself that it’s true. It certainly makes other people in your life feel better about your situation. But here’s the problem, or eleven, with the argument:
- It’s not normal for your child to have to take pills to digest her food every time she eats.
- It’s not normal for a child to have to do 5 nebulisers a day and chest physiotherapy twice a day, just to try and clear her lungs of glue-resembling mucus.
- It’s not normal for a ‘just a little cold virus’ to put your child in hospital.
- It’s not normal to understand oxygen saturation numbers when you’re three or four years of age.
- It’s not normal for a child to do bloods on a regular basis.
- It’s not normal for your child to look forward to going to the hospital to quiz the nurse on toy names (but it sure is a testament to that particular nurse – you know who you are!)
- It’s not normal for a child to know what IVs are and to have gone through them several times.
- It’s not normal to have to check with visitors that they don’t have colds before they come to you or you go to them.
- It’s not normal to need a steriliser for life rather than for the first year of life (to sterilise neb medicine sets).
- It’s not normal for a family to know the names of most bacteria, where they’re likely to be found and what antibiotics can/can’t treat them.
- It’s not normal for a mother to watch her daughter playing with her doll and pram and have their heart break on the inside, wondering if that precious little girl will ever be able to have children of her own.
- And it’s certainly not normal for parents to constantly worry about what age their child will live to.
Maybe I’m in a bad mood. Or maybe if we’d had less bumps in the road over the last 2 years I’d feel differently. But regardless of how it may appear, I’m not actually trying to be negative. I 100% believe in living a life that’s ‘as normal as possible’. But it’s not your standard definition of normal and never will be.
Rather it becomes your ‘new normal’. You get up an hour earlier to fit in nebs and physio. You find an extra hour in the evening to do the same. You ask friends hard questions before you meet up with them. You pull out of things more often than most, either due to your child being ill, or someone in the place you’re going to being ill. You trick your child into physio at any given opportunity – spotting every chance to run, skip or jump somewhere instead of walking. You cry when your child is suffering from an exacerbation, wishing you could take the hurt for them. You know you’re not a normal parent, although you spend a rather large chunk of your life trying to blend in as one.
You see Cystic Fibrosis is not ‘normal’, no matter how much we’d like to pretend that ‘it’s normal to us’. But ‘normalising the abnormal’ is what I believe CF parenting is all about. Sometimes this feels achievable. Sometimes it feels impossibly tough.
But that’s what we do.
Because the ‘new normal’ is now as normal as it gets.
Illustration courtesy of the talented Olivia Golden, @goldenwonder1
