Thursday, June 21, 2012

Cystic Fibrosis is life shortening …now here is the good news!

Cystic Fibrosis is not a thought of mine every minute of every day, just every time I look in Elena’s eyes.
So, every other minute.  ;)
I don’t let Cystic Fibrosis bring me down, bum me out, make me sad, cause me to ponder how short my child’s life will actually be as a result of it, or bring tears to my eyes….then again sometimes I do.  Thank goodness my family has a strong faith!  Thank goodness God is pretty rockin'!
I allow my “cry days” over Elena’s fate.  They have decreased as each of her birthdays pass by.  However, now I am approaching the time in Elena’s life where she is asking questions and beginning to REALLY understand what having Cystic Fibrosis could mean for her.  I can prepare myself for my “cry days” and now I am working on preparing answers for her questions about her own mortality.  Answers like: We are all one day closer to dying.  We don’t know when any of us will die; could be today, tomorrow or 80 years from now! Dying is not something to be scared of.  Heaven is pretty awesome! You are so healthy because of all the great medicines and the wonderful medical care you receive; you don’t need to worry about it! Yet, does she? 
YES, she DOES need to worry.  Not really worry about it as much as be diligent DAILY of her medicines, exercise needs, and caloric intake.  Even IF she keeps up with the extra care her body needs, she could still be defeated by CF.  It happens everyday; we hear of young kids, teens, adults with CF struggling and sometimes loosing the battle. 
Earlier this week, Elena and I watched a new movie preview about twin sisters with Cystic Fibrosis which spurred on this conversation between Elena and I :
Elena: Mom, what is a transplant?
Me: It is when someone who has  a sick organ in their body gets a new replacement organ from someone else.
Elena: So, why would someone with CF need a lung transplant?

Me: You know why we do your breathing treatments and vest therapy?
Elena: Yes, to shake up the extra mucous in my lungs and get out the germs that are hiding in there.

Me: Right!  Well, some people with CF can’t get the germs out of their lungs with treatments and so their lungs start to die and quit working.  To continue to stay alive they need ALL their organs to work, so they need a new pair of lungs.  When someone their size doesn’t need their lungs anymore, they will gift their lungs to the sick person.
Elena: WOW!  That is really nice!

Me: Yes, it is an excellent gift of life!
Elena: My lungs are pretty strong, right?
Me: Yes, they are very strong.
Elena: Ok, Mommy.

This was an easy question, but I know our future holds lots more conversations that just don’t seem like an 8 year old should have to ponder. 
To see the preview and/or order the movie visit:

Now HERE is the good news!  YOU can help. 
Join Team 65ROSES or have your kids join Rosebuds....RUN with us!  Volunteer with us!  Walk with us!  Many of my runner friends have shied away from joining the team due to the high fund raising expectations.  I TOTALLY understand!  I’m not one to enjoy asking for money and donations.  However, it is easier than I thought.  Especially when I remember WHY I ask and for WHOM I ask.  This year, we are going to do family fundraising so you, your spouse, and your children can work together to fundraise. You can ALL run (adults on team 65ROSES and kids on Rosebuds ) but all your fundraised dollars will go towards your family goal.  You will find, as I have, that it is so much easier to have your children asking for money!! J Still not convinced?  You don’t HAVE to raise money to be on our team.  It is appreciated and excepted with giant smiles, BUT SO is the benefit of having you wear our team shirts out on the course, helping to spread the word, helping to educate more people of one of the most common genetic diseases out there. 

Every dollar donated goes towards helping CF families either monetarily or by giving towards research that is actively searching for a cure for CF. Joel and I truly believe that the new medicines Elena has been exposed to since her birth have kept her strong and healthy. Her lungs have been spared permanent lung damage because of new medicines that were a product of successful research from your donated dollars.  
Consider joining our team 65ROSES for the 2013 Georgia Marathon & Half in March by visiting:
When registering adults for the Half or Full marathon, select "Team 65ROSES - Miles for Cystic Fibrosis" when you are asked to "join a team."

When registering kids for the Fun Run, select "Rosebuds- Miles for Cystic Fibrosis" when you are asked to "join a team."

Is this too long to wait?  Check out our website for upcoming races like the Big Peach race on Labor Day that is run by and totally benefits Team 65ROSES!

Elena and her family THANK YOU!  Elena and I are hoping to break records this year with the number of runners on her Rosebuds team!  I'm hoping to be surrounded by a sea of our team 65ROSES blue shirts when running the 1/2 Marathon!  Help us break records and sign up soon!

Thanks so very very much!  Our friends continue to humble us by all they do!

and finally, Elena's follow up appointment is June 27th.  At that time, we will learn how her lungs are doing after our barrage of meds we've been doing at home.  As my dear friend and fellow CF mom says, "Take THAT CF!"

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