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?? 

My wonderful "special" baby Jack

  So I have decided to write a blog for a few reasons.  Number 1 being that I love to write.  Number 2 being I love to talk/write about my son.  Number 3 I want to make Cystic Fibrosis a household name so when I tell someone my son has CF they say oh I know exactly what that is (and ideally they go home and give $5 to the CF foundation ;))  I have also been told I should right a blog so here is the moment you have all been waiting for duh duh duh duh....
 So I'm not going to hand out a bunch of facts like you could expect from a doctors office or the Cf foundation as it were, I am here to give my personal one on one daily ( possibly hourly, weekly, monthly, whenever the old brain has something to share :))
      We found out through routine prenatal screening that I was a carrier for Cystic Fibrosis.  Whatever that was, I hadn't a clue.  The geneticist assured me over the phone that the likelihood of my husband being a carrier was slim to none.  I barely even thought much about it when we went down for my husband to get his blood drawn.  We were simply ruling out any problems because we were going to have that perfectly healthy baby that all expectant parents dream about. 2 weeks later we got the results, My husband was in fact a carrier for CF.  All shaking and tears aside, I composed myself and scheduled an amnio ASAP at the Docs. discretion.  Twelve grueling days later I called the geneticist, while my husband was on three-way from work.  It was then that we were told the bittersweet news.  "All chromosomes are normal and the fetus came back positive for CF."
      "Do you know the sex" I asked through heavy tears and heart throbbing gasps.  "It's a boy."
    In all honesty, this is something I have never really talked about before but I figure nows just as good a time as any to get it off my chest.  Obviously I was completely heartbroken over the whole idea of "MY" baby having special needs.  Why me why us why HIM.  There was a lot of questions and no answers.  I was in a deep depression and I felt ashamed and almost embarrassed that may son was to be labeled as a special needs child.  I didn't know what I was going to do.  Should I hide it from people so they don't treat him differently?  Should I let them find out, what the hell should I know.  My mind was racing I didn't even like pictures of him getting his enzymes or getting his "pats" done and I definitely cringed when my family members would post pictures of that very thing on facebook or myspace.  I felt like we became outcasts that no one would want to be around a baby who was different.  I don't even like to say different.  I was an emotional lonely wreck and I still am sometimes when I think too much about it.   The truth of the matter is I had a lot of growing up to do real fast when my baby was born and I still have a long ways to go.  I am so amazed by Jack now and I could never imagine a life with out him.  When I say he is my hero it is because he truly is.  I have had to lean on him so much in the 17 months that he has been alive and he has made it so easy with how great he is.  I now realize I am NOT afraid to say my son has CF anymore I would shout it from the roof tops if I could.  It might not be to appealing so I'm going to first start here on this blog and if I think no one is listening who knows I might just end up being a crazy lady that stands at the Sonoma plaza waving a big flag that says CURE CF!  Who knows?  The point is I didn't know what kind of momma I was going to be was I going to shirk away from people and keep being shy and hope I would shrink into a crack somewhere under my floor boards or am I going to be an advocate as much as I can to make CF stand for CURE FOUND!  I'm choosing the latter...  Don't be afraid to comment I would love to hear feedback and have any kind of support sometimes all I need is a hug from Jack to make me feel like everything is going to be alright, but other support is always welcome.  Thank you for reading it has been a pleasure taking up your time ;)!!