I have said before that when a child has a life threatening disease, the whole family has a life threatening disease! CF affects all of our lives in many ways.
In the mornings, El can not eat before her physio, so I don't let the other two eat either. This can make for some rather grumpy starts to the day, and even though I usually get her physio done first thing it does take about 40 minutes!
When El has appointments, the other two get looked after by friends or family, which is fine for now as they love it, but I wonder if they will always like it? They also go to Grandma's when EL has admissions.
Perhaps the biggest thing at the moment is Em questioning why El has physio, enzymes, and medicines. I try my best to answer her questions. This morning the question was, why does El need enzymes. I explained it by saying that CF makes El's body work differently to ours and that enzymes help her digest her food properly. I don't know how much made sense to her though.
I worry about the day they find out how serious CF actually is. I think they have a general idea, but not the full idea. I have always talked openly of death to them, like when their fish died, but I am not sure that anyone can prepare for the death of a loved one.
My biggest worry as they grow is that they might resent that El has CF. But that is what our life is and I hope they will make the most of it.
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