1. The Creon. Millions of tiny granules. Get.In.Everything. I'm talking stuck on faces, nipples, corner of tiny baby eyes, in fact...every surface of the damn house! Don't get me wrong these are wonderful little things for oli and he needs them however they drive me up the wall on a regular basis! Like on a scale of just-knocked-over-a-bottle-of-creon to 10 how shitty is my day? I think you can guess.
2. The high fat,high calorie diet. It's simply a necessity for a person with cf... however! It's not a necessity for his parents who are now consuming the most devine food they have cooked or bought in their lives. Well honestly Ian couldn't put weight on if he tried, but I think I've found the reason I have held onto that baby weight. I simply can't resist a spoonful here and there of chocolate custard, covered in cream with sprinkles of chocolate. Tablespoon that is!
3. The physio. I can now write about this because it's been my biggest struggle during the past year and I've only just got on top of our routine. As much as I appreciate the importance of airway clearance there are some things that are just so difficult with an active baby. Being held in funny positions and being pat like a bongo drum isn't Oli's idea of a great time. Infact he likes to let us know that he really doesn't appreciate it in his loudest cries possible. We have now come up with the perfect solution. Ian does a jig every morning for 15mins and we are all good. I cry with laughter and Ol just can't get his head around what the hell his Dad is doing.
4. The meds. Well the meds are okay it's the administrating we have words about in our house. Ian organises the meds, he has a system and he likes to stick to it. You see Ian's got an extremely stubborn personality, he doesn't like it when people change things or question his systematic approach to his dispensary. 'People' like a little nurse with a whole lot of opinions & experience in drawing up liquids in her past life. We have agreed to disagree on the great 'water for injection' saga however when he's not Iooking...
5. The sensitive tummy. My favourite foods including lentils, quinoa, crusiferous veggies and curries are usually rejected by the sensitive tummy of my little cffer. This isn't surprising really as you would need a steel stomach to deal with that combo at the best of times. A past history of bowel surgery probably excludes you from that spread for life I'd say. Ian wins on this war, lentils are officially off the menu in this little house.
6. The pancreatic insufficiency. That's what the creon is for. I must have creon on me at all times. I'm talking ALL times. If not you better hope you don't come into contact with any fat and my god if you do I hope you have a nappy handy. For example; Ian and Oli's regular early morning trip to the shops always results in them seeing Ols number one fan behind the deli counter. This lovely older lady provides him with polony slices in abundance. The five minute trip around iga then home and without creon the polony has already gone straight through him! But my goodness does he love that polony. Note to self, never forget creon, you will pay.
7. The experts. People telling me I'm doing it wrong or not doing enough! Not so much these days but in those early days we got smashed by opinions and advice that we weren't doing things right. Maybe it was because I was uber sensitive and holding onto my sanity by a very fine thread. The drs and nurses and physios and dietitians telling me I was not doing enough just about ruined me! I think other cf parents will agree you go to these appointments dragging your feet and mentally prepare yourself for the comments and questions. I'm not ashamed to admit I sometimes lie! Not about huge stuff but about little things ie; did you try what I told you? Yeh but he didn't like it. Hehe it's so hard being a new parent at the best of times but throw into the mix a whole heap of experts and you will feel like a failure! Don't get me wrong they are fantastic at what they do but a hormonal sensitive mama and off hand comments from people who aren't in my shoes do not mix!
I hope you enjoyed a lighter look into the life of a CF mum. Much like first world problems I have issues I'm challenged with on a daily basis and I feel like looking at them in a humorous light makes them easier to deal with. In our house we share the opinion that if you don't laugh you will cry so we laugh at our situation, our selves and cf regularly. CF is going to be with us for life, we may as well find humour in the lighter side. Who knows maybe we will have another bub with CF one day. Well to be honest we are hoping for a bus full of CF kids so we can get lots of money from the government and never have to work another day in our lives. Haha there I go with the CF jokes again.