Thursday, March 31, 2011

Are you going to watch or are you going to play?

     People with CF are always being told what they can't do.  Adults with CF say that when they were small, their parents were told by doctors to, "enjoy them while you can...because they probably won't live past 8 (or some other ridiculously low arbitrary number)."  Then when the child's 8th birthday would roll around, they would say something like..."maybe he will make it to see 12."  When kids with CF began living long enough to graduate from high school, they had some decisions to make: do I keep listening to this BS and sit around and wait to die?  or do I go about my life as if I AM LIVING and I'm going to continue to live?

     Parents of children with CF have to make their own tough decisions right out of the chute: How are we going to incorporate cystic fibrosis into our lives?  What is our new "normal" going to look like?  Some families keep the illness to themselves, and try to make cystic fibrosis on the sidelines of their lives as much as possible.  I met one family at a CF parent education night organized by our clinic, that wasn't aware that The Cystic Fibrosis Foundation operated a website!  These families seem to strive for the traditional definition of "normal."  They do not want cystic fibrosis to change them or their lifestyle. In my opinion, they seem to often have a more peaceful acceptance of the disease. Then there are the families that fail to accept that fate...

     Cystic fibrosis has tormented me relentlessly since the day I heard those awful words.  For almost 9 months after Brady was born, I was sort of in shock.  I could barely say the words "cystic fibrosis" without breaking down.   Then one day I learned that our State was considering legislation to cut a program that provided benefits to adults with CF, to balance our budget.  Brady would not be directly affected, but he was on a similar state operated program for children with CF.  Would it be cut next?  Something inside me snapped.  I suddenly realized that other people--crooked politician type people--were going to be making decisions regarding my child's health and access to medical care and treatments.  Most of them didn't even know what cystic fibrosis was.  I woke up from my CF coma and started writing letters to Senators, House Reps, and the Governor.  I even did a TV interview for our local news. The politicians were claiming that pharmaceutical companies would step forward and pay the cost of the super expensive CF meds that the patients would no longer be able to afford.  I strongly disagreed.  No matter how much I hated talking about CF, I realized that I had to...and loudly!  I had to be an advocate for Brady.  The adult CF program was actually saved that year ('09), only to be cut one year later.  Adults with CF in Idaho suffered greatly because of the budget cuts and I was devastated. My news bit can be viewed here:

     Keeping me going was the fact that VX-770 was progressing through clinical trials and beginning to look very promising.  The non-profit Cystic Fibrosis Foundation was funding the research and I knew it relied on donations to keep investing in these types of drugs.  I realized that curing this disease was going to boil down to money.  Raising awareness about CF and working to support the Cystic Fibrosis Foundation became my mission.  I can't let my son die because of something as stupid as money.  Brock and I decided that we weren't going to stand on the sidelines.  We want to be in the game. We want to fight.  There is no price tag that could be put on the gift that they are giving us by bringing this miraculous treatment to market.  How can we ever repay that?--keep fighting. Every morning I am on pins and needles as I turn on my computer.  Recenly,  I've been seeing headlines that turn my world upside down!  From what I hear, things are going to be very different for our family when Brady is able to take VX-770.  As I watch this miracle unfold, certain people flash in my mind that have told me things that Brady CAN'T do. 
*The first contact I had with another CF mom was over the phone and she was very "gloom and doom."  She made it seem like CF only had one horrible inevitable fate.  It was traumatizing and I haven't spoken to her since.
*The respiratory therapist that prepared us for doing breathing treatments for the rest of Brady's life.  It felt like we were being sentenced.
*The Hill-Rom Vest representative that mentioned to me that, "it would be something he would need for the rest of his life."   

     I guess what I want to drive home is that I have new-found belief in the idea that anything is possible.  When Brady gets all fixed up, I am going to call that grumpy mom back and thank her for being such a poor example for me...because it made me want to do such a better job for other moms reaching out for some hope.  It has helped me form some of my most cherished relationships, with people that understand exactly what I am going through.  Then, when it is time, I am going to demolish Brady's compressor and give his Vest machine to someone who needs it...and smile smile smile. And keep fighting. 
"Those who say it can't be done should not get in the way of those doing it."
Chinese Proverb

No comments:

Post a Comment