While Cystic Fibrosis doesn’t define our family, it’s certainly an extra (uninvited) member of the household, and we have no choice but to learn to live with it. And for an ‘invisible’ illness, it certainly knows how to make its presence felt sometimes.
To give you a little insight into what it’s like inside a CF family (or at least inside this one), I’ve been playing around with some phrases beginning with the letters ‘CF’. Probably a daft idea, but here goes My Insider’s Guide to a Family Living with Cystic Fibrosis by Bernie Martin – Little Miss Salty.
#1. Constantly Famished
In our house, there just can’t be enough food! Why have one slice of lasagne when you can have two? Why leave any chicken on the carcass? Yes, I’d like fries with that!
People with Cystic Fibrosis need to take in up to 50% more calories than their peers to allow both for malabsorption and for the extra energy they need to breathe. Even with enzymes to help absorb protein and fat, it’s not an exact science, so ‘more please’ is music to a CF parent’s ears. Even with all the extra food, some people with Cystic Fibrosis still struggle to gain sufficient weight.
We are blessed that our daughter has a great appetite and is a really good weight. But I’m acutely aware that most parents deal with one of two extremes – ‘constantly famished’ or ‘can’t feed’. For some kids, the oral appetite just isn’t there (or weight gain is just not adequate) and peg feeds directly into the tummy are needed to bulk up intake.
#2. Crippling Fear
Of course you try and cover this one up, as you don’t want your child to feel different or frightened of the world. But often, while you’re acting normally on the outside, you’re screaming on the inside.
The world is a scary place when your young child is susceptible to illness. If you allow yourself to think about it – other people, supermarket trolley handles, soil, hay, snotty noses, coughs, mould, dust – it feels like everything is a risk factor.
Yet sometimes your own fear is the biggest risk factor of all when it gets in the way of living any kind of a normal life. I try to deep breathe and hand gel my way through the most anxiety-ridden days!
#3. Crazy Faeces
There ain’t no stool like a CF stool. Not for the faint-hearted, parents get over themselves pretty quickly when they have a baby with Cystic Fibrosis. From luminous green to orange oil, you see it all. What’s really important, though, is to pay close attention to that rainbow waste, as it gives you huge insight into the health of your child’s digestive system and how well their enzymes are working for them.
#4. Courageous Fighters
Our kids put up with interventions that most adults would struggle to deal with. Frequent cough swabs, IVs for weeks at a time, bloods, X-rays and hospital admissions.
Some have ports. Some have feeding tubes. Most have a heavy load of daily medication and nebulisers. And yet all the kids with CF that I know are insanely agreeable, happy and inspiring. They could teach the rest of us a thing or two, that’s for certain.
#5. Can’t Function
While us parents aren’t the ones whose bodies are physically fighting Cystic Fibrosis on a daily basis, our hearts and minds fight it every second of every day.
Sometimes we can’t sleep because we’re afraid our kids are breathing funny. When our children are coughing, our hearts are breaking. When our kids are poorly in hospital, our mental health goes under with them. And Dr. Google is a terrifying temptation.
We’d give anything to trade places with our innocent children and take the pain away. I’d end my life today if I thought for one second it would guarantee my daughter a full one. We probably appear as people who flip-flop between ‘we’ve totally got this’ and total mess. Bear with us; our ability to function is generally linked to our child’s lung function.
#6. Cautious First
We will ask you if you’re sick before you come over for dinner. We’ll ask you if anyone in your house is sick before we call over to visit you. Please, please don’t be offended. We’ve seen two-week admissions come off the back of what’s a basic runny nose to someone else.
We can’t control the rest of the world, but in our inner circle, we can at least ask sensible questions and avoid unnecessary risk. Remember that when you’re well, you are ALWAYS welcome. So visit us on the double then.
#7. Clean Freak
This one lessens over time as you learn that no matter how much disinfecting you do, there’s still bacteria practically everywhere.
When our daughter was a baby though, all toys got disinfected every night and people practically got sprayed coming in the door! Now we apply more workable rules, like shoes off in our house and wash your hands when you come in. Clean hands are a bit easier to achieve than a clean world! But it takes time to learn to relax.
#8. Candid and Frank
The injection of perspective you get when your child is born with a health challenge is like nothing else I’ve ever experienced. You lose your ability to tolerate bullshit, time wasting and insincerity. So CF parents will tend to tell it like it is and be super-efficient with their time.
We’re extremely compassionate people but also extremely straight-talking. Embrace the honesty – the world could use more of it.
#9. Cancelling Frequently
We make plans but sometimes, CF has other plans. We might show up to 10 things in a row and then back out of 5 in a row.
Please don’t stop asking – we love you and want to see you (you do our mental health the world of good), but sometimes CF has other ideas.
So let’s overdose on playdates, coffees and dinners when all is well, knowing that sometimes it won’t be.
#10. Completed Family
The first thing I need to say is that this is absolutely not the case for everyone who has a child with Cystic Fibrosis, but it is the case for us. Plenty of parents go on to have more children who may be born with or without CF. I admire their bravery so much. But after several years of debating this issue with ourselves, we’ve decided that CF has put a full stop to the number of bodies in our household. (Perhaps we’ll add a four-legged friend!)
Decisions like this are mostly about recognising your own personal, emotional limitations. You have to know where your strength begins and ends. Our children need functioning, loving parents, and that’s where our future energy will be channelled. Of course such a decision comes with a heavy heart, so be gentle when talking to us about your plans to procreate a football team.
That’s it – crash course in Cystic Fibrosis over. So to keep up with the theme, c’est fini!
If you need help or support as a family living with Cystic Fibrosis or wish to donate to help families visit – www.cfireland.ie