Disclaimer: my daughter is only eighteen months old and on minimal meds therefore I am relatively new to being a CF parent and these mainly apply to babies.
So life has changed for us in a big way. I knew nothing about cystic fibrosis before our second daughter was born and I’m busy fumbling my way through a steep learning curve. CF is kind of complex, right?! In no way do I mean to trivialise the utter evil that is CF but I do feel my new-found parent behaviour mildly amusing from time to time, and thought I would share some of the things that make me laugh in amongst the sadness of dealing with this disease.
You know you’re a CF parent when….
1. At the early appointments you find yourself staring at every child around wondering whether they have CF too. People with CF are unable to meet because of the risk of cross infection so patients attend a different clinic depending on their health and are seated well away from each other until they can be allocated a private room. I used to think, ‘well, he/she looks good’, trying to guess their CF status. Now, looking back, I realise that I will never see those who are ill as they would not be at a routine clinic and would be on a ward, admitted to hospital. Sad.
2. You join EVERY Facebook support group going. I am the type of person who likes to know everything and have a real fear of missing something so the best way, for me, is to see it all. The good and bad. I have CF mam friends who are only in one or two groups as it can be very harrowing seeing the harsh reality of CF day in, day out, but I just can’t not know. My husband has just signed up for The Great North Run again and on the information he received it was suggested he join the closed Facebook group for runners. Off he went to join it and he was shocked to find he had friend already in there. Yep, me! Ha!
3. You have a full cupboard of medicines, tablets and apple purée. Whenever a local supermarket has cheaper apple purée pouches in stock I just go and empty the shelves. I don’t give it much thought and sweep the lot into my trolley but probably get some funny looks! People with CF have to take digestive enzymes called Creon with everything they eat – if it has fat in it – as it affects the pancreas as well as lungs. Babies naturally cannot swallow pills so we have to empty the contents of capsules onto a spoonful of apple purée.
4. You visit the local pharmacy more than your parents’ house. I ring them at least once a week, send them Christmas cards and give them thank you gifts. Thankfully we have a brilliant chemist so that side of CF tends to run smoothly unless the doctor’s receptionist gets involved! You all know what I mean… The amount of medication varies from patient to patient as CF affects each individual differently. Our daughter takes nine syringes of medicines per day along with approximately sixteen creon capsules and half an omeprazole capsule twice per day.
5. You get unbelievably chuffed when you find a healthy food or snack that is high in fat. Again, clear the shelves until baby decides they don’t like them anymore. Also spotting something that looks great in the supermarket only to be disappointed by the low fat content. Every cystic fibrosis team has a dietician attached and a lot of emphasis is placed on weight gain. We have been advised to follow a high fat, high calorie diet like all other CF patients.
6. You totally regret that you didn’t pay more attention in science class at school. I now spend a lot of my time reading medical papers, giving up and asking my husband to read them then give me the dummy’s version! There is currently no cure for cystic fibrosis and patients are lucky to reach thirty years of age. Life expectancy is continuing to go up and up with the development of new treatments which is why fundraising is so important to us.
7. You Google ‘cure for cystic fibrosis.’ You would think being a part of 43898877733333330000000000 Facebook groups would have all bases covered for potential new treatments and possible cures. Nope. Still like a good Google every now and then. No stone unturned and all that!
8. You pull some stealth moves when you hear someone nearby cough. In fact, I bet some CF mams can differentiate between cough types on one hearing. Cough detectives if you like; a finely tuned ear knowing whether it’s safe to stay put or subtly move as far away as possible. Coughs and colds are par for the course with little ones but can be so damaging for someone with cystic fibrosis so if you have a cold please keep away or don’t be offended if we keep our distance!
9. You find creon granules EVERYWHERE. In your bed, in between the floorboards, in your bra (breastfeeders you know it!) Roll on the day your baby can swallow capsules!
10. Finally, you start a blog. Enough said.
If you would like to learn more about cystic fibrosis and ways in which you can help click here.