From time to time I get asked questions from parents whose child or children have CF. The most frequent question I am asked is "What tips or tricks do you have for parents {whose child has CF}?"
My answer in short is always the same. Allow them [the child] to grow or learn to be passionate about life. Without the passion all the hours spent doing treatments, attending doctors visits and being sick will take over leaving them bitter. When we have a passion we see the "crappy" stuff as a means to an end. We have to do the treatments in order to carry-out our passion.
It also helps us to put the "time" it takes to all the treatments into perspective. I mean, an hour twice or three times a day, is nothing if your able to spent 6-8 hours living a full life, right? Sure. There are times when it really totally sucks but in the grand scheme of life its really time that we'd waste watching tv or surfing the internet or texting our friends {by the way you can do all those things while to doing treatments}.
Don't stop your kids from playing sports or playing a part in the upcoming play. Just make the treatments a must-do before they can do what's fun. The fun stuff is what keeps us mentally okay. Chronic illnesses have an incredibly high rate of depression, so the fun is just as necessary as the other stuff with fancy medical names.
Over time they will see that in order to be healthy enough for the fun stuff they'll have to do their treatments. No one {not even "healthy" folk} can run, play the flute, sing in the choir or recite the lines in the school play if they can't breathe. The rewards for doing the treatment will be the ability to participate and that is worth more than mom or dad nagging. BUT it has to be instilled early on that treatments come first so we can do the fun stuff.
So, to recap my tips are:
Overall, remember they are more the CF. They need and want to do what everyone else is doing and thats okay, as long as treatments are done!
~Doodlin'
My answer in short is always the same. Allow them [the child] to grow or learn to be passionate about life. Without the passion all the hours spent doing treatments, attending doctors visits and being sick will take over leaving them bitter. When we have a passion we see the "crappy" stuff as a means to an end. We have to do the treatments in order to carry-out our passion.
It also helps us to put the "time" it takes to all the treatments into perspective. I mean, an hour twice or three times a day, is nothing if your able to spent 6-8 hours living a full life, right? Sure. There are times when it really totally sucks but in the grand scheme of life its really time that we'd waste watching tv or surfing the internet or texting our friends {by the way you can do all those things while to doing treatments}.
Don't stop your kids from playing sports or playing a part in the upcoming play. Just make the treatments a must-do before they can do what's fun. The fun stuff is what keeps us mentally okay. Chronic illnesses have an incredibly high rate of depression, so the fun is just as necessary as the other stuff with fancy medical names.
Over time they will see that in order to be healthy enough for the fun stuff they'll have to do their treatments. No one {not even "healthy" folk} can run, play the flute, sing in the choir or recite the lines in the school play if they can't breathe. The rewards for doing the treatment will be the ability to participate and that is worth more than mom or dad nagging. BUT it has to be instilled early on that treatments come first so we can do the fun stuff.
So, to recap my tips are:
- Find something to be passionate about
- Instill that treatments and taking care of ourselves comes first
- Allow your child to do participate in whatever activities they want (within reason) as long as they do their treatments.
- Set your child up to succeed. Set up a schedule for treatments that works with their hobby or passion. {Example: get a portable nebulizer so that they can do treatments while driving to games, plays, friends, etc}
Overall, remember they are more the CF. They need and want to do what everyone else is doing and thats okay, as long as treatments are done!
~Doodlin'
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