When Chester was diagnosed, I remember the Doctors explaining about CF, telling us what we would have to do to keep him well and being able to give a brief outline of things that could happen, with CF affecting each person so differently they couldn’t tell us exactly what to expect only the possibilities. Looking back now, all the chats we had were about what we should expect from Chester, we were never really told what we should expect as the parent. I am still on this constant cycle of learning about CF and there is always something new to learn, so I wanted to put together a short list of things that they don’t tell you about becoming a CF parent.
You will find you have a sudden fascination with all things poo related (well related to your child’s poo anyway) it will be entirely normal for your daily conversations to revolve around poo and you will regularly receive pictures of other people’s children’s poo which you will be required to review and compare and comment on, as much as it sounds weird and maybe quite disgusting, I have found this has become completely normal. You will also probably find yourself looking at other children’s poo wishing that your child’s offerings looked more like this child’s. poo envy is real and perfectly normal (I think).
Although Google is not always your friend when it comes to researching CF, it does have its uses and you may find yourself doing that much research you can basically be classed as a scientist, Vertex Pharmaceuticals may as well take you on staff right now, you have it all except the actual qualifications! Before you know it you’ll be talking chloride channels, gene therapy and genetic coding. Whilst you’ll be engaging with science buffs around the world it is worth remembering that it is more than likely that no one around you that isn’t affected by CF will have a clue what you are talking about.
If your child is anything like mine, you will almost certainly become a little bit of a pro at hospital admissions (not quite expert level yet but Chester is working on it!), you will get used to sleeping on a mattress that feels like you are laying on a piece of paper which has been placed on top of a row of pencils. You will wake with your body aching like you did 10 rounds in the ring with a pro boxer and you will feel like you have visibly aged after each admission. You will find it perfectly normal to pack your “Hospital clothes”, yes, I have two sets of clothes these days, ones for “normal everyday life” and then ones for hospital admissions. Making sure you have appropriate clothing for an environment that fluctuates from hot to cold in seconds is difficult but is much needed for any hospital stay.
You will find yourself getting used to your child making the most awful smells in public, whether it be filling their nappy at a really inappropriate time (praying it stays contained in the nappy) or just a bit of wind, the embarrassment will eventually cease as you gradually get used to the disapproving looks you get and you will eventually find it funny (on the inside) watching others choking on your sons vile smells as you queue to pay for your shopping. You’ll find it easy to clear the immediate vicinity of any enclosed space and you should be reminded that on an airplane there is nowhere to run.
You will know the fat content of every children’s snack going, in fact ignore that, you will know the fat content of every snack going, you won’t need a book or app to tell you which one is laden with fat, you will just be drawn to them from here on in, you will no longer be hunting for low fat, low salt, or low calorie treats, if it’s not loaded with fat it won’t be going in your cupboard, this does not help anyone who wishes to be successful in dieting!
Your house will go from a peaceful haven to being full of awful noisy toys, trumpets, saxophones, whistles, flutes and recorders, any parents nightmare! But you will learn to embrace the racket your out of tune, tone deaf child produces all in the name of physio, you may find yourself donning your ear defence or if not lucky enough to be the owner of such items sitting with your fingers, but deep down you will be pleased that racket is shifting stubborn mucus! If you live in a semi-detached or terrace house, your neighbours may actually end up hating you.
Funny things aside there is a serious side to this as well, sadly one of them is that you will lose friends. It’s inevitable, I’ve lost count of the friends who have un-friended me, it’s made my Christmas card list shorter that’s for sure! Although it used to bother me, I don’t let it anymore, I’ve put it down to the fact some people just don’t know how to cope with CF or they don’t know what to say, but in reality people lose touch all the time when their paths go different directions, so as sad as it may make you feel the most important thing to remember is that the people you can rely and depend on and that actually matter will stick around, they will stand by you and you’ll see they are the only ones that really matter, I am fortunate to be surrounded by some of the most amazing people.
On top of this the CF community is one of the most amazing communities, I’ve lost friends, but gained so much more, I gained a whole family, you will never again be alone and you will certainly not make the CF journey on your own. There will always be someone there that knows how you feel, knows what it means to be a CF parent and completely gets it.