A Couple Things I Never Thought I'd Have to do or Think About

It's amazing how our life events change our perceptions

Organ Donation:  I never gave the idea of organ donation a second thought until I became the parent of a CF child, who could at some point need a lung transplant.  The idea of people taking the organs out of my body (even though I'd be dead) just really wasn't appealing to me.  Now that my child could be in need of one of these organs, I think differently.  My current thought on organ donation is: In heaven, where I know I'm going, everything will be perfect and I won't need those organs, so why not leave them to give life to someone here on earth who's journey isn't yet complete?  If you've never considered organ donation, please consider it...you could possibly save 8 people's lives with your donation.  8 people, that's HUGE! What better gift to give someone than the gift of life?
Blood Donation: Anyone who knows me, knows I HATE needles.  If they are going into someone else, I'm good, but if they're coming at me, I'm not a fan.  However, sometimes it's just necessary to suck up your fears because it's for the good of someone else.  I speak from my own experience when I say: "It's really not that bad!" They ask you a few questions, prick your finger to check your hemoglobin (that's actually the worst part), sit you in a recliner with a tv, put the little needle in your arm and draw the blood, then you get all the free sweets you want.  The whole process takes no more than 30 minutes.  Who doesn't have 30 minutes once every 2 months to possibly save 3 peoples lives? 
Becoming a Health Insurance Guru: Luckily, Chris and I have always had health insurance.  All we knew was when we went to the doctor, they submitted "stuff" to the insurance company, they paid, and then we got sent a bill, and paid the rest.  It's not that simple!  When you start requiring more from the insurance company than just the occasional doctor's office visit being paid for, they start: denying claims, giving you the run around, and making mistakes. So, you have to be in the know of how the process works and how to appeal when claims are denied.  It's ridiculous to think some person who has absolutely no medical experience whatsoever can make a determination of whether or not the insurance company will pay for a procedure. 
What I've learned thus far...1.  Be nice, yet firm.  Being hateful gets you no where.  You want these people to agree with you.  If you're yelling, that's likely not going to happen.  Appeal to them as a parent.  2.  One person saying no, doen't mean no...there's plenty of people up the chain. 3.  Make your doctor's office be your advocate. 4.  Question all charges...these people are human, billing mistakes are always made.
Becoming an Advocate for my Children and CF: I do not routinely share my political views.  I don't enjoy conflict and I hate when someone pushes their opinions on me.  I believe everyone has a right to their own opinion, and I understand completely that everyone does not agree with me on everything.  That's the great part of being an American, we can have our own opinions!  With that being said, no one knows what's better for my children than Chris and myself, especially not the government. Our kids can't do it themslves, so if we aren't the voice of our children, who will be? 
Last year, the government proposed deep cuts in the funding for research (this includes alzheimer's, cancer, parkinson's, MS, etc., etc.).  Really, of all the things to cut, you'd like to cut reseach?  Why not make cuts to: $100,000 on a video game “preservation” center, $120 million in salaries to dead employees and $15.3 million for the infamous Bridges to Nowhere for instance?
Most recently, the Social Security Administration proposed changes to Social Security Disability Benefits, specifically regarding people with chronic lung problems like CF.  Last year at this time, I wouldn't have a care in the world about this, however, now I do.  Why would the government see it necessary to make it harder for those specifically with CF to receive SSI?  We have been blessed with good jobs, health insurance, etc., so we do not qualify for anything.  However, many CF families are on one income or a person with CF who has defied the odds and lived into their 30's and can't work because they spend hours a day day doing their breathing treatments and have a virtually non-existant lung function...Really? I know the cost of having a CF child with good jobs and health insurance, and to make it harder for people who don't have those things crazy.
The Sielicki family is becoming known with our State Representatives.  I want them to know us, be educated about CF, know our struggles, know our routine, and know that it is their job to represent people like us.  It is NOT ok for them to put politics above people!
Becoming a Fundraiser: I hate for people to constantly ask me for money, and I am not a fan of asking people for money however since we got Lauren's diagnosis, we've just had it on our hearts to fundraise for the CF Foundation.  We feel like we're actively involved in finding a cure by doing this.  Since CF is an "Orphan Disease," (meaning it affects so few in the population) it receives virtually no funding from the government.  The only way a cure will be found is through the funding of the CF Foundation.  So, thank you to all who have supported our fundraising for CF.  It's Lauren's only chance for a cure.