This is a repost from another cf parent.
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis
Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis
Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!
