How do I?

How do you ask someone to help save your child's life?  With April 13th and Great Strides looming in the wake of the new year, I can't help but lose sleep over it.  In school I used to sell candy to try to win a CD player or fund my way into sixth grade camp.  There was never any harm done if I didn't quite sell enough candy, I never obsessed over the neighbors houses that I didn't visit or the relatives I neglected to call in hopes of winning even the smallest prize in the catalogue.

These days I am still fundraising, but its for something that means so much more than any prize I ever could have won in elementary school.  It's something that I am so emotionally and physically involved in that sometimes it Is hard to keep my sanity.  It's my son's life.  Every day we fight as a family to stay on top of his medication and his treatments and keeping him as healthy as humanly  possible for a child with a chronic lung, pancreas, and liver disease.  As the new year approaches I will have another fight to face.

Fundraising when the goal is a cure for my son, so that his life will continue on way beyond 37, when it has no monetary value is impossible to set a dollar sign to.  So where do you go from here?  How much is my sons life worth to you?  Has he ever smiled at you?  Maybe he has made you smile?  He's three so maybe he has been shy around you?  Given you a high five?  Maybe you have never even met him, is his life still worth something to you?

Every year I feel as though I harass my friends and family (through Facebook) and other outlets as I try to not get emotionally invested in my pleas for money for the CF Foundation.  The hard fact is I rely on anyone who could possibly help me raise just a little more money no matter the amount.  I absolutely hate asking for charity; But when the stakes are so high I have to.  So as April 13th draws near, please don't be annoyed by my quest to raise money.  If you would like to donate, walk with us, maybe even just to walk with us in spirit and help us raise more money we would love to have you on the Jack Pack.

Sincerely,
The lady whose crazy about her son

TOUGH $H!T

        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. :)

"Aware-ness? I Hope?"

    So after today's events I decided I needed a little outlet to let go some of my pain so here goes, take it how you will.  For those of you that didn't know I went to our local farmers market today to raise awareness and funds for the Cystic Fibrosis Foundation.  I was looking forward to this for the past month because I figured not only do I get to tell everyone about my awesome Jack, but I also get to talk about my biggest passion (next to being Jack's momma of course) finding a cure for Cystic Fibrosis. 
  
I wouldn't have always been so eager to talk to the public about CF but after I went around door to door in my neighborhood I got an all around positive vibe from everyone I met.  Genuine good hearted people.  So I figured surely there must be more of these people out there just as excited to find a cure as I was and I couldn't wait to meet them.
 I didn't count on a few key things however, the first being that the table I was planning to use for my booth didn't fit in my car but I shrugged it off and instead settled on a table that could've easily been mistaken for a TV tray.  I was still excited to spread awareness.  Then of course I realized I didn't have a fold up chair so I took one of my kitchen chairs (I'm telling you I must've looked real professional)   I was still in the groove even when I got to the market and had trouble setting up my pop-up tent.  To which I might add made me think back to Psych class where we learned about the group theory  (how the more people standing around, the less likely someone is to help a person in need) and I found it a little humorous.  I knew people were watching but no one offered a helping hand (all able bodied people mind you).  Finally this little old man, he must have been pushing 86,  came over and helped me set it up.  He was so sweet :).   He even stood on a chair to fully extend the tent for me after my attempts failed.   Then I sat, and sat, and sat with a smile on my face greeting people that chanced to walk by.  They didn't stop until they would reach the next booth beside me or across from me.   The first lady that came to me brought her daughter along and she told me in a matter-of-fact tone of how her uncles 5 children had CF it must've been 30 years ago you know before they lived long (As if she was talking about a runt in a litter of puppies)  Then she went on to ask her daughter if she knew what it was and than said well I am sure you can tell her all about it.  That probably shouldn't have bothered me as much as it did but the fact that she was my first visitor and I was so excited to show her how cute he was and I felt like I more or less hit a brick wall instead of getting across to her the need for a cure. 

I feel like I should take this time to let you in on a few unspoken rules in the CF community and probably any other issue as delicate as CF.  Rule #1 Please use a bit more sensitivity when talking about the mortality of my son it may not be a big deal to you but it is to me.  This means don't show me the same amount of sensitivity that you would had we been talking about the overgrown weeds in our field that we probably 'should have mowed down a week ago'.  Rule #2 If I don't know you don't ask me how my son is 'doing'.  When people ask me my first response is always 'good'.  First of all I'm not a doctor nor do I claim to be one.  When you ask me 'how is he doing' it makes me feel like you are looking for me to tell you that he is doing 'good' which therefore discredits the severity of the disease in your mind because I don't tell you everything going on in our day that makes him look 'good'.  That if we didn't have the technology we do today I guarantee he wouldn't look as 'good' but it is still something that could always spiral down and I am scared shitless of him ever even having a hospital stay like so many other CFer's I know.  Rule #3 Don't tell me how HORRIBLE the disease is and say 'good luck' and walk away with a smile on your face please! 

Having a special needs child is such a humbling experience that makes you take nothing for granted and I guess when I saw people bringing their kids into the farmer's market that were around Jack's age seeing how relaxed and happy and clueless they were I was pretty jealous.  Whenever I am with Jack I always maintain a happy look as best I can but I am also always scouting every area out (is that person smoking, what if that kid didn't wash his hands after he went to the bathroom, that person is coughing are they sick, what do they have is it contagious?)   Don't get me wrong I am happy that their children are healthy but the fact that they just walked right on by leaving me in the dust with my 'terminally ill' son that if they took a second to get to know they would love him and learn something and possibly help save his life.

Lots of love and thank you for allowing me the time to express my thoughts

Happy Mother's Day

Happy Mother's day to all the wonderful mom's and mom's to be out there on this lovely day.  Fortunately for all of us there are too many of you fabulous moms for me to personally thank for bringing up such amazing kids into this world (I only have a 30 minute window while Jack does treatments) I love all of you!  A special shout out to all of my fellow CF momma's and every other special mom to a special needs child because it takes someone extra special to go that extra million miles to make sure you raise top notch individuals!!

Thats it I'm done I don't want to do this anymore!

I give up I don't want Jack to have Cystic Fibrosis anymore!  I don't want to ever have to face the possibility that I bury my own son.  It's not for me I'm not strong enough, I can't go through this I have so much pain in just reading Sarah L Jones blog I can barely hold myself together.  I know many of you reading this have no idea what I am talking about and I don't know if I could really even blame you.  Two years ago I was a totally different person, I was invincible and so was everyone around me.  I don't know what to do I want a cure so bad and I just don't have the support that I need to feel that I am doing my part. I know most people even my facebook friends wont read this and thats mainly because its not them if they don't look my way they can somehow avoid it in their minds.  But lets face it people are still dying children are still dying from this terrible disgusting disease and there is nothing that I can really do about it except maybe stomp my feet around and try to grab as much attention as possible.  My son does not deserve this no one deserves to go through this bull shit!  This afternoon I went into Jack's room to find puke all over his crib, most people just brush that off and say kids will be kids, they get sick get over it.  I don't have that luxury.  (Applaud goes to you who does I was once in your shoes, I vaguely remember now)  Immediately my mind is sent into panic overload.  Especially when Jack clings to me after I pick him up out of his crib, he NEVER does that he usually can't get out of my hands fast enough.  Then he started falling asleep again in my arms and as I took him to my bed he remained lethargic and pale.  I changed his clothes and from then on it was like he was in a battle with himself, his mind wanted to stay awake but he was just too weak to move.  I don't like seeing Jack like this I hate being reminded of his disease on a daily basis.  I hate having to send him to bed without doing his night time vest because I have to wager which is better him being shook to the point that he throws up again, or let him go to sleep with possible mucus festering in his lungs ready to grab on to any bacteria it can.  I HATE you Cystic Fibrosis if you were a person I would have NO problem killing you with my bare hands.  Most people that see my blogs or my facebook posts quickly scroll down and try and wash away any negative.  Good for you, like I said I was there once.  You can only be invincible for so long.  I wish we could have the CURE today!  I wish we could've had the Cure two weeks ago when baby Shane died just a few days short of his April 23rd due date the odds were stacked against him being a premie and having CF.  I wish we had the CURE 1 year ago before 7 year old Conner knowingly celebrated his last birthday I HATE YOU CF!!! I wish we could've had the CURE before anyone had to DIE!!  "UNLESS someone like you cares a whole awful lot, nothings going to get better, It's NOT!"  We can't go back in time but we can raise as much awareness as possible and for you that are getting "tired" of my efforts to make my son Jack's lifetime a LONG-time you might as well de-friend me because as long as there is air coming out of these lungs I will promote Cystic Fibrosis until there is a CURE. 

The NOT-SO-Secret Life of a CF momma...

            

:CAUTION: You may have already read this in my fb notes**

         My son Jack is 17 months old.  He has a caring and charismatic personality that seems to draw everyone to him whenever we are out in public.  What most people do not readily know upon first meeting him is that he has Cystic Fibrosis.  He looks like a very normal, very healthy 16 month old on the outside so it comes as a shock to most people when they find out that Cystic Fibrosis is the number one killer of genetic diseases.  

           We first found out that our baby had CF when I was pregnant with him.  Although abortion was an option that we considered we finally realized that our baby boy deserved to live his life to the fullest, who were we to to take that away from him?  Looking back today I know that it was the best decision we ever made.  We knew the challenges and obstacles that were in front of us, but we knew that our son was worth anything.  I never could have fully prepared myself for what we were to face but adaptation has become my middle name.  

          The first time it really hit me that my baby was not just a normal healthy baby was soon after he was born.  He needs to take enzymes before he eats.  The enzymes come in the form of hundreds of tiny beads inside of a capsule.  They had to be sprinkled onto his tongue with the understanding that we had to make sure we didn't let any beads linger in his mouth after he was finished eating.  Any beads left undigested could cause ulcerations in his mouth.  You can imagine its hard enough to have to dump beads into a hungry screaming unsuspecting newborns mouth, but for me, a new mom it took everything I had to not just break down and scream right along with him.  This became a regular routine of shoving enzymes down his throat and then sticking boob or bottle in his mouth (the latter after ulcerations were not welcomed by my nipples) and then swabbing his tiny mouth for any misguided beads.  

           This was all well and good and easy enough.  Then came the percussions.  I had little compression cups to literally beat any mucous out of his lungs.  Yes, there was crying on both of our parts.  Having to repeatedly beat a newborn in the chest in different spots all over the lungs for 2 minute intervals was hard to swallow.  This lasted 30 minutes twice a day.  This was quite possibly the hardest time of my life and as he has gotten older and we have come into a routine it has gotten progressively easier for both of us.  He now wears a vest that shakes the mucus out of him and he can swallow 3 capsules at once in a little bit of apple sauce.   He is my rock, my hero, my awesome little man.  Most people that see him don't know what he has been through in his short little life, but I do.  I am amazed by how truly awesome this little toddler of mine is.  

         I am so excited for the new drugs that have come out in hopes of treating the underlying defect on the cellular level of Cystic Fibrosis.  We still have a long road of trials and FDA approval to go through, but I'm not going to lie, I have already given my hopes up.  I am sold!  I think we have the winning drug combo in the VX drugs and its hard for me to think otherwise.  I don't want to think of the possibility of these drugs not working.  I look at other CF moms and I couldn't imagine having to go through as much as they have gone through in their years of being CF moms.  They are awesome women and I am so privileged to have personally met some of them.  I have so deeply invested my self into the possibility of these drugs working and I am afraid what the future will hold for my son and other CFer's out there if this doesn't work.  The hard fact is that finding a cure takes trial and error.  Trials cost money and so do errors.  The Cystic Fibrosis Foundation needs money to make errors and hopefully sooner than later find out in the next 18 months or so of patient treatments of the new drugs they will find that they do in fact have the key that will give hope to my son and every other sufferer out there.  We need a CURE!   If you would like to donate any amount is sooo very much appreciated and I will repay you with love, and Jack will blow you kisses!  

** I know now I'm just cheating using old posts but don't worry every other post will be completely new material... I promise!! :D

Non Smoking Section

  So often times I am able to see things from every angle as well as backwards and this usually leads people to think I am indecisive.  I like to stand in the middle ground and just observe my surroundings and always try and find the best in people.  Anyway I figured I would post something that I had written in my notes from a while back and I just want to let people know that I am not a hateful person and if you have a problem with this post its ok.  I'm just protecting my son as much as I possibly can.  I wrote this in August of 2010....

“Do you ever want to just punch someone in the face?” I asked my husband as we sat in the parking lot of Target. As he was getting our baby ready for his “Jack Pack” as we call it (baby bJorn thing) to do some quick shopping, my husband sighed. “Are you talking about the two people over there smoking?”“That’s exactly who I’m talking about” I said with a forced smile. This inspired me to write about what has been on my mind for a long time. I’m all for freedom and civil liberties. That being said I’m also for protecting what is inhaled into my babies already predisposed weak lungs. This was by no fault of my own, my husband and I just happened to unknowingly be carriers for Cystic Fibrosis. Unfortunately we both passed our recessive genes on to our otherwise happy, beautiful, healthy baby. I understand that you should be able to do to your body whatever you darn well please. Sure you have the right to fill your lungs with disgusting tar and nicotine and countless other chemicals warned by the surgeon general to cause birth defects. But with all this said, Isn’t it my babies natural human right to breathe fresh open air when he is outside? Everyone reading this knows exactly what I am talking about. We have all been victims to people carelessly allowing their second-hand chemicals to escape into the lungs of the innocent. You see them everywhere, they are outside of smoke-free buildings lighting up. So the moment you exit you get a fresh breath of smoke. They don’t even care! Why should I have to scan parking lots, parks, and other public areas like an infantry-line soldier scouting out potential minefields? Every day I go out into public I have to worry about my baby being exposed to harmful chemicals and its not fair. It’s not fair to me and it most certainly is not fair for him. As his mother I would like every breath he takes to be nicotine-less. I guess that is too much to ask.Maybe there is no way to completely ban smoking. But I think it should be perfectly acceptable to get punched in the face, if you think breathing in your disgusting habit, ruining the otherwise perfectly healthy lungs that you were so lucky to be blessed with is more important than my baby or any other persons lungs. Thanks for listening to my rant. 

Written with ALL the LOVE in the world ;)

Robin Johnson

I know the world doesn't revolve around Jack and I (shocker right?) but if you were in my situation you would probably have the same thought process I do CF sucks and cigarettes are just another catalyst in its nasty arsenal of health hazards for CF'rs.  Let me know what you think?....

Is there a nice way to tell someone they are ruining my sons lungs without sounding like a biotch??