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. 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 had some fun putting together a guide using phrases that all begin 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 of 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, we’d like fries with that.
People with cystic fibrosis often need to take in significantly more calories than their peers, to allow for both malabsorption and the extra energy their bodies use 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’re lucky that our daughter has a great appetite and is a good weight. But I’m acutely aware that most CF 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 isn’t adequate, and feeding directly into the tummy is needed to help bulk up intake.
#2. Crippling Fear
Of course you try to cover this one up — 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 more susceptible to illness. If you let yourself think about it — other people, supermarket trolley handles, soil, hay, snotty noses, coughs, mould, dust — it can feel 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 normal life. I try to breathe deeply and hand-gel my way through the most anxiety-ridden days.
#3. Crazy Faeces
There ain’t no stool quite 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 paying close attention to that rainbow of waste — it gives real insight into how well a child’s digestive system and enzymes are working for them.
#4. Courageous Fighters
Our kids put up with interventions that most adults would struggle with. Frequent cough swabs, IV antibiotics 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.
#5. Can’t Function
While we as parents aren’t the ones whose bodies are physically fighting cystic fibrosis day to day, our hearts and minds fight it every second of every day.
Sometimes we can’t sleep because we’re worried our kids are breathing strangely. When our children are coughing, our hearts break a little. When our kids are unwell in hospital, our own wellbeing goes down with them. And Dr Google is a terrifying temptation.
We’d give anything to trade places with our children and take the difficulty away. We probably appear as people who flip-flop between “we’ve totally got this” and total overwhelm. Bear with us — our ability to function is generally linked to our child’s health on any given day.
#6. Cautious First
We will ask if you’re feeling unwell before you come over for dinner. We’ll ask if anyone in your house is sick before we call over to visit you. Please, please don’t be offended. We’ve seen a two-week hospital admission 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.
#7. Clean Freak
This one eases over time, as you learn that no matter how much disinfecting you do, bacteria is still practically everywhere.
When our daughter was a baby, though, every toy got disinfected each night and visitors practically got sprayed at the door. Now we apply more workable rules, like shoes off in the 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 experienced. You lose your tolerance for time-wasting and insincerity. CF parents tend to tell it like it is and be 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 ten things in a row, and then back out of five in a row.
Please don’t stop asking. We love you and want to see you — it does 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 between ourselves, we’ve decided that CF has put a full stop to the number of people in our household. Perhaps we’ll add a four-legged friend instead.
Decisions like this are mostly about recognising your own personal, emotional limits. 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 own plans to grow your family.
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 support families, visit www.cfireland.ie.
Frequently Asked Questions
What is cystic fibrosis?
Cystic fibrosis is a genetic condition that mainly affects the lungs and digestive system, causing the body to produce thicker mucus than usual. It requires ongoing daily care, including medication and physiotherapy. For medical detail on diagnosis and treatment, CF Ireland is the best source.
Is cystic fibrosis something you’re born with?
Yes, cystic fibrosis is a genetic condition that a child is born with, rather than something that develops later in life.
How can I support a friend or family member whose child has cystic fibrosis?
Small things help enormously: let them know if you or your household are unwell before a visit, don’t take it personally if plans get cancelled at short notice, and keep inviting them anyway. Being included, even when plans fall through often, means a lot.
Where can families in Ireland find support for cystic fibrosis?
CF Ireland (cfireland.ie) supports families living with cystic fibrosis and welcomes donations to help fund that support.
Related Articles
- Supporting a Child with a Chronic Illness: What Families Need to Know
- How to Talk to Kids About a Sibling’s Health Condition
- Building a Support Network as a Parent of a Child with Additional Needs
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