Can living with Cystic Fibrosis ever be ‘normal’?

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

 

 

 

‘It could be worse’

Another year, another sick CF Christmas ‘break’ for my little lady. Thanks Santa for your second-year-in-a-row delivery of Parainfluenza and your ‘surprise’ gift of post-bronch pneumonia for a little extra, unexpected excitement. You arrived at exactly 3.30am on Christmas morning, bang on time for ‘Christmas fever’. If we are, in fact, on your nice list, I’d hate to see what the naughty nellies were given. Next year, please deliver to my house one extremely large DULL MOMENT. It is the only thing my family craves at YuleCrueltide.

For some reason, the cruelty of (any) sickness at Christmas is something that’s uniquely unquantifiable and intensely loathsome. It’s as if the baubles are laughing at your well-rounded stress and the fairy lights are flashing intermittent ‘fuck you’ signs in your miserable face.

As we emerge into the New Year – still coughing like it’s 2016 I might add – I find myself clinging to the phrase ‘It could be worse’ with every last sticky pad of my sanity. Yet it brings me little comfort as my mind appears to be embroiled in a fully-fledged war with demons that are possibly greater than the physical ones we are facing.

But in an attempt to convince my curled-up-in-a-ball-rocking mind that ‘it could be worse’, here are the actual reasons why it genuinely ‘could be worse’.

We went to A&E twice, but we got home again.
The previous two Christmases, we went to A&E and stayed for 2 weeks. This year, we went to A&E twice but came home again. This is a testament to the super strength of Little Miss. Sure, her sleeping sats kept dipping into the 80s. Sure, she’s coughing like someone who smokes 60 a day. But she’s still able to sit up and play ponies and convince the docs that she’s got this shit under control. (I need lessons from her.)

We’ve been dealing with low sats, but have managed to avoid being oxygenated.
Thank you four-hourly Ventolin nebs. This has never been enough for Little Miss in the past, but by the skin of our teeth and the steam of salbutamol, we’ve pulled it off. I may be suffering from PND (Parental Neb Depression – where you do nothing but administer and sterilise nebs for weeks on end, in a state of frenzied worry), but there is a success story in the blur of exhaustion and cough-till-you-puke-athons, should you choose to see it.

We’ve been treating with the wrong antibiotic, but there is a right one.
While the Parainfluenza has to just run its long, marathon course, the chest infection can be fought with antibiotics. Unfortunately we spent 12 days on one that this particular bacteria is unaffected by, but we’re finally on a different one and we’re hoping that we’ll see an improvement soon. The ‘it could be worse here’ is that many bacteria that CF sufferers culture are resistant to antibiotics so we’re lucky that the one we have is just resistant to penicillin. USE ANTIBIOTICS PROPERLY PEOPLE. People with CF’s lives depend on us not abusing them into oblivion. The phrase ‘post-antibiotic era’ is the scariest word combination on this earth to families like ours. Let’s protect the antibiotic sensitivities that are left.

Christmas is over.
So I won’t have to feel sorry for us at such biblical proportions hopefully for another 12 months. I’m not usually one for wallowing in self-pity, but Christmas unearths my depressive tendencies and ignites them with its humbug horrors. So long jingle bell-hells!

The coughing will stop sometime, right?
I can’t explain how every breath-stealing coughing fit causes a new break in a CF parent’s heart, but it does. To see a 4-year-old with lungs that can’t cope with a walk from the car to the hospital door is an injustice that my mind will never be able to reconcile. My little lady has been coughing since September, with a peak of RSV hell at the end of November and Parainfluenza purgatory from the end of December to…(please insert a coming soon date universe). It has to stop eventually. Doesn’t it?

So, in conclusion…
We’ve lost a little weight. We’ve lost a lot of sleep. And we’ve also lost a chunk of mental strength. But we’re here to tell the tale. So I guess it’s true that ‘it could be worse’.

Illustration courtesy of the talented Olivia Golden, @goldenwonder1