Post 3-Being A Caregiver
I don't know any other way. Being the mom to a child with Cystic Fibrosis is not a walk in the park. Past the medications and check ups, is really deep worry. You know that something will happen. When? How bad will it be? Will he recover?
You prepare yourself for the inevitable, try to put it aside but know its there.
You can't run from it and you can't make it go away.
Watching him grow up is amazing to me. He has done really well with his disease and I am so thankful that so far (fingers crossed) we have not had any major hiccups. He is 10 so in the back of my mind I prepare. I prepare for puberty. I prepare for him moving out and going to college. I prepare for when he gets married and wants to have children of his own.
All of the things I cannot control I try to control for him. One day I won't be here nagging him morning, noon and night about doing his vest and taking his TOBI so I feel like I have to do it now.
What he doesn't understand is that I am scared. His dad is scared. I am scared the second we get to the hospital for a CF check up. I get this feeling that one day I will have to leave him there. It might be unwarranted given how well he has done, but with CF, doesn't that all come to an end?
I don't want to lose him. I don't want to lose him to this disease. I want him to live to be 100 and not worry about his own mortality at such a young age. I see him doing great things with his life and I don't want that cut short.
Ask me how he is going with his CF and I will tell you that he is doing ok, because he is. Deep down, though, I want to grab him and run. I want to put him in a bubble and keep him there. That won't ever happen obviously, but I do know what WILL happen: as long as I am here, living and breathing, Jax will be priority number 1. His health will come before my own.
I might not have control over his future but I have control over his now.