If you search the meaning of cystic fibrosis you are likely to find the cold gruesome facts of a median life expectancy of 37 years, how it affects the lungs and pancreas and other organs and of course that an estimated 30 thousand individuals in America have the disease and that 1 in 3,000 live births are diagnosed with the disease. You are also going to see the major reason of the disease is a malfunctioning gene that results in a build up of thick sticky mucus.
In ordinary people, like most who will probably be reading this, we have thin secretions that help clean and replenish our lungs and other organs. Think of a stream this is crystal clear. The only reason the stream is clear is because the water is constantly moving carrying any bacteria and residue away. Then you have someone with cystic fibrosis (cf). Like stagnant water just sits and collects bacteria and anything else so does mucus filled organs.
This is all common knowledge for someone dealing with cf. It's easy to see this and read it, but if you are like me you didn't quite get a visual of just how thick and sticky this mucus is. Until recently I didn't "get it". I read several statuses of fellow cf moms on facebook just this past week that changed all that. One explained how her daughter had to literally scrape the mucus that was stuck to the roof of her mouth using her finger to get it to come out. Another explained how after her child had made it to the sink she still had to wipe the mucus up with a paper towel because the water could not get it to go down the drain and picking it up was the only way to dispose of it.
This is some tough shit stuck to their lungs. These kids and young adults are tough as nails. To be beaten with "cups" as a baby, to be shaken so hard by a vest as a child that this mucus will actually loosen its hold and make its way up and out of them is completely amazing.
Everyone that hears our story that doesn't know much about cf thinks that Jack has it so tough. That he is a little warrior [he is definitely this momma's warrior]. Which compared to most kids I agree he has to go through a lot. An average of an hour and fifteen minutes of his daily routine is spent on breathing treatments (vest, inhaled medicine), he has to swallow three fairly large capsules before every meal, he has 3 prescribed medicines to take every day on top of his specifically designed vitamin for those with cf; but compared to most with cf Jack has it easy.
Three meds a day is nothing when you hear of picc lines, IV's, and g-tubes for babies and toddlers. Antibiotics on and off every other month 7 hospital 2-4 week hospital stays by the age of 6!? Jack has it EASY.
On top of all of this I am a complete drama queen of a cf mom. Every cough no matter how big or how small that comes out of his 30lb 2 1/2 foot (or so) little frame leaves me cringing about what is in there, what will come up what wont. Every puddle that he splashes in, or dirt he plays in, there is a battle inside of me trying to find some sort of balance of letting him be a 'normal' 2 year old and worrying about whether or not that dirt harbors Pseudomonas (which would have him in antibiotics extra breathing treatments and possible hospital stay). Finding our way through a crowd translates into dodging runny noses and loud coughs, cigarette smokers, and clouds of dust.
All of this being said I know I live the life of a 'sheltered cf mom'. So while Jack doesn't need the extra treatment, or IVs, or Picc lines, and g-tubes I feel it is my duty to try and raise that much more awareness and funds. In the name of moms who are busy with 4 treatments a day and rinsing IVs and filling g-tubes I will raise money for them. So we can find a cure. So they don't have to worry. So Jack never has to experience g-tubes or picc lines.
If you would like to help me reach this goal and you can find it in your heart and wallet, please consider donating to the cystic fibrosis foundation. No amount is too small or big. I have a goal of $4,000 and with your help I can surpass this and help everyone with cystic fibrosis. Thank you for reading this please feel free to comment your thoughts to me. :)
In ordinary people, like most who will probably be reading this, we have thin secretions that help clean and replenish our lungs and other organs. Think of a stream this is crystal clear. The only reason the stream is clear is because the water is constantly moving carrying any bacteria and residue away. Then you have someone with cystic fibrosis (cf). Like stagnant water just sits and collects bacteria and anything else so does mucus filled organs.
This is all common knowledge for someone dealing with cf. It's easy to see this and read it, but if you are like me you didn't quite get a visual of just how thick and sticky this mucus is. Until recently I didn't "get it". I read several statuses of fellow cf moms on facebook just this past week that changed all that. One explained how her daughter had to literally scrape the mucus that was stuck to the roof of her mouth using her finger to get it to come out. Another explained how after her child had made it to the sink she still had to wipe the mucus up with a paper towel because the water could not get it to go down the drain and picking it up was the only way to dispose of it.
This is some tough shit stuck to their lungs. These kids and young adults are tough as nails. To be beaten with "cups" as a baby, to be shaken so hard by a vest as a child that this mucus will actually loosen its hold and make its way up and out of them is completely amazing.
Everyone that hears our story that doesn't know much about cf thinks that Jack has it so tough. That he is a little warrior [he is definitely this momma's warrior]. Which compared to most kids I agree he has to go through a lot. An average of an hour and fifteen minutes of his daily routine is spent on breathing treatments (vest, inhaled medicine), he has to swallow three fairly large capsules before every meal, he has 3 prescribed medicines to take every day on top of his specifically designed vitamin for those with cf; but compared to most with cf Jack has it easy.
Three meds a day is nothing when you hear of picc lines, IV's, and g-tubes for babies and toddlers. Antibiotics on and off every other month 7 hospital 2-4 week hospital stays by the age of 6!? Jack has it EASY.
On top of all of this I am a complete drama queen of a cf mom. Every cough no matter how big or how small that comes out of his 30lb 2 1/2 foot (or so) little frame leaves me cringing about what is in there, what will come up what wont. Every puddle that he splashes in, or dirt he plays in, there is a battle inside of me trying to find some sort of balance of letting him be a 'normal' 2 year old and worrying about whether or not that dirt harbors Pseudomonas (which would have him in antibiotics extra breathing treatments and possible hospital stay). Finding our way through a crowd translates into dodging runny noses and loud coughs, cigarette smokers, and clouds of dust.
All of this being said I know I live the life of a 'sheltered cf mom'. So while Jack doesn't need the extra treatment, or IVs, or Picc lines, and g-tubes I feel it is my duty to try and raise that much more awareness and funds. In the name of moms who are busy with 4 treatments a day and rinsing IVs and filling g-tubes I will raise money for them. So we can find a cure. So they don't have to worry. So Jack never has to experience g-tubes or picc lines.
If you would like to help me reach this goal and you can find it in your heart and wallet, please consider donating to the cystic fibrosis foundation. No amount is too small or big. I have a goal of $4,000 and with your help I can surpass this and help everyone with cystic fibrosis. Thank you for reading this please feel free to comment your thoughts to me. :)
