Life isn't fair!

No, it sure isn’t. But that doesn’t mean I can’t try and tip the scales to even it out a little. I hear people with CF say a lot that they are just like everyone else. And that I should not treat my child with CF any differently. Hard to do when you have to make them take a gazillion medicines and give them chest percussions and nebs a couple times every day! (On top of the million other things they have to go thru!) But, I do think there is a very true and valid point here. Yes, Cole’s life will be different than Chaz’s ~ but only to a point. So, I decided that everything else needs to be the same for both of them.
One of the first times I dealt with this was bath toys. Yes, this blog post will revolve around bath toys! Chaz had always had bath toys. Most of you know how much kids love to play with toys in the tub! Once Cole was old enough to play in the tub we had to figure out what we were going to do. Bath toys for Cfers are a no-no. Water can get inside them and bacteria can grow so it is advised not to have any. At first I kept them up and only Chaz could play with them. Then I realized a couple things. I did not want to have different rules for each kid. Life is already unfair enough – I didn’t want to add to it! I also did not want to magnify to the boys that Cole has this disease and how much it is going to affect their lives. Also, the truth is that if Chaz is exposed to bacteria – Cole is probably going to end up exposed to it as well. So, I needed to find a solution that was the same for everyone involved and sanitary. I threw out all the toys that could possibly hold or absorb water. I kept the ones that I can put in the dishwasher. Now, every couple days we run them all thru the dishwasher and sanitize them and in between we rinse them well and keep them in a mesh bag that allows them to thoroughly dry out. This might sound stupid and trivial but it was a pivotal point for me as a parent. I will need to make a million more of these decisions along the way and I need to have my framework clearly defined ahead of time. And yes, Cole’s life is going to be different than most but that doesn’t mean that I can’t do what’s within my power to make it the same! Our next battle with this is food. We have already started explaining to Chaz that he will not be able to eat and snack whenever he wants. Cole has to take enzymes (pills) any time he eats. The enzymes work for about an hour. He can only take so many per day or he will have bad side effects. So, it is important that Cole has a regular eating schedule. Also, it is important that Cole gets more calories than the average person because his body has a difficult time absorbing the fat and nutrients in the food. The boys will have to agree on when they want to have snacks in between meals. They are always allowed to eat raisins or fruit though because Cole does not have to take enzymes with them. (I love this!) Right now this is not really an issue since we still dictate their eating schedules but when they are older and eating us out of house and home this rule is going to be VERY important.

So, no life ain’t fair ~ But I still want my parenting to be !!

Oh yeah - Cole and I both got what Chaz had but I am SO HAPPY to say that we are all doing FINE now and I think it's run it's course!  Amazing!  Cole just continues to amaze us!