You know.. I knew when I was pregnant that I was going to have to change my daily schedule when the baby came. I knew things weren't going to be the same, I knew that I was going to have to learn the different stages babies went through. I even knew EVERYTHING that I had read about on taking care of a baby didn't apply to us after we first heard the words Cystic Fibrosis. Or that most of it didn't apply to us, because a little still would. Now that the boys are older it has become a little more difficult. You see when the boys were babies it was tummy medicine (acid reflux) enzymes, bottles, diapers, and treatments and then the regular stuff bathing, playing.... I think that's all babies do? I don't remember ( hehehe ). Even when we started introducing foods it wasn't that bad, but now with the toddler thing coming into play with trying to mix everyday stuff like nap time, breakfast, lunch, dinner, brushing teeth, potty training, (ha ha) and even a descent bed time. Then trying to add in ALL of the CF stuff from enzymes, treatments making sure they eat high calorie stuff. Because you know I looked at the back of things to see how many calories, fats etc... were in things but it was to see how low all that stuff was and I still do that for my husband and myself but now I have two carts when I shop low cal & high cal. And if their on any antibiotics and heaven for bid the antibiotic not be able to be given within so much time in between milk or vitamins. I don't even want to begin to think about how much harder it is going to be once their in school!!
Right now I'm pulling my hair out and it could very well be because Carson is smack dab in the middle of his terrible two's and Brandon just thinks its fun to do whatever brother is doing. I don't???? I just hope I'm doing everything I can do to make sure they are going to be well rounded boys because I also know that every kid needs stauncher and discipline. It's HARD when your two year old throws a fit because he doesn't want to eat whatever you have made (let alone try it) because you might just say then " Fine then don't eat it but your not going to get anything else ". Well in their case I feel you can't do that because one you just gave them enzymes that cost money and if they don't get enough calories for the enzymes they poop and then they loose calories. So then it's a double edge sword because then offering them something that they will eat which is normally something that yes they can have like Cheetos or a Pop tart but when your trying to get them to try NEW stuff that isn't always snacky stuff but high calorie food... food.
So right now I'm stuck because there has to be a way to be a good parent and a good CF parent all at the same time... right???
I just wish I could figure it out because it's killing me trying to juggle it all and have a so called NORMAL life and raise good strong, healthy boys. Yet then I have the reality of the CF life hit me a crossed the face when one of them looses some weight or you feel like a bad mom when they won't eat what you have made and so you need to give them what we would call junk food, just to make sure they do eat something. Then feeling like you just gave in to them throwing a fit. Or just wondering if the way your trying to mix a everyday schedule with a CF schedule is the right way for your kids?
I guess it's just a VERY fine line I'm going to have to learn how to walk.
