Dead Man Walking

I went to a local high school play this week...Dead Man Walking. You know the one that was made into an Oscar winning movie. Well the movie was based off of a book written by Sister Helen Prejean and the Sister came to the high school to speak an hour before the play started.

What a wonderful woman and funny too. It was so interesting to hear how it all came about for her to visit a man in death row. A man that committed such a horrific crime. She was so honest about all of it...her fears, the mistakes she made, what she learned and what she'd do over again if she could. In the end what she learned most is that a new mission was set before her and that was to save lives. All lives, even of those who people would call a monster because of the crimes they committed. It's a given that she's opposed to any kind of self-inflicting death; she's Catholic and has sworn her love and service to obey God. Thou Shall Not Kill means exactly that, even if it means saving the life of someone who has taken the life of another.

I was amazed by the high school kids acting out this play. It is such a serious theme to portray among an audience of fellow high schoolers and parents of these teens. I cried several times during the play and I couldn't help but think about CF during it. I thought about it during different lines that were spoken from different characters...

Matthew Poncelet: The murderer, he of course represented CF. This cocky, arrogant, MOFO he thought nothing of what he had done by murdering those two young teenagers. Just like CF is within my baby's body. It doesn't give a crap what it's doing to her, all she has to do just to stay alive; AND it certainly doesn't give a rats ass what it does to me, my husband and everyone else that loves her. The pain we go through when she gets sick or hurts is nothing to CF...it could care less.

Earl Delacroix/Clyde and Mary Beth Percy: The parents of the kids that were murdered by Poncelet. They represent us CF parents...fortunately for me I am not in their shoes because I still have my daughter with me, but I know parents that have lost their child to CF and my heart aches like no other when I try to comprehend what they must be feeling. There is NO greater loss than to lose a child and I hate CF for threatening the life of my baby. I hate the fear it has instilled in my life and in her life.

Governor Benedict: The only one with the power to save Poncelet's life but won't due to his political agenda. How often do we face the same in the CF world...with the high expense of the medicines our CFers must take, the meddling insurance companies that won't cover needed prescriptions yet tell us we can take something else even though they see the doctors request for particular meds that are proven to help our kiddos. The lobbyists on Capitol Hill, the FDA, NIH, etc...all involved in their own political agendas. Not 100% of the time, but too often for sure.

Hilton Barber: The lawyer trying to save the life of Poncelet. In a weird way he represented two sides of the CF world: one side represented those people that just don't care about my agenda of fighting to find a cure for CF. These are the people that won't donate one cent towards my fundraising campaigns when I know they have the money to do so. They ignore my letters and emails and year after year, give to other organizations but never to mine. And then the other side represents everyone that has my back and will fight the fight with me. The many that have donated time and money and love and continue to do so campaign after campaign after campaign.

Matthew Poncelet: Yep him again. There's a line he says to the Sister about how awful it is to have been told he will be killed. They tell him it could be a week, a month, a year...then six years go by and the same is said and he waits and and waits never knowing when it will come to be and he states that's the worse of it...the waiting. That part of the play hit me hard because that's how I feel about CF. This awful pit in my gut wondering if this new cough is the one that will send my kid to the hospital, if the fever she's fighting will be the first time she gets IVs administered. It's an awful feeling knowing that CF has entered our world and when least expected send my world crashing down and braking into a million little pieces. And it breaks my heart when my kiddo goes through this. For the most part she handles CF like a trooper, but she has her days too and the pain in my heart to watch her cry and be scared of the 'what ifs' can be unbearable.

Sister Prejean: The woman that wouldn't give up. Despite the anger she faced from the parents that lost their child, she was determined to fight for what she believed to be right. What strength, what loyalty, and filled with so much love! That's the feeling I got when I watched the character of the Sister, it reminded me of the strength I have to stand up against CF and that I WILL continue to stand up against it even when others won't. I will fight my fears as well and not let it consume me and that strength will allow me to teach my children the same. Sure, sometimes fear takes over but I'm strong enough to push it away and let me continue fighting the fight, living the life and mostly I have the strength to appreciate all the good my family and I have.

I suppose some of you reading this may be thinking that I over think things WAY too much, but this is who I am...not that I'm proud of it, it's just the way it is. CF is part of my life even though I'd rather it not be and when least expected, it shows up in a lot of the things I do or in this case it showed up in a high school production of Dead Man Walking...

...who would've thunk?!

Why Not Me?

Weird that I just read a blog from dear, fellow-fibro, Josh Mogren titled Why Me? It's weird because I was just talking about that statement to someone in regards to when I got the news that my daughter was confirmed to have cystic fibrosis. Many people I know would have said "Why me?" during those dark times. It's a legit question for many but I can honestly say that that one did not come up during my dark, gloomy days of dealing with the horrific news, nor has it ever come up.

I suppose it's because I'm such a realist. I mean I always knew that when my hubby and I decided to have kids the chance of having a child born with an ailment was placed in the deck of cards. Which card we'd get we didn't know, but I knew we could get one we didn't want...and of course that's exactly what happened in regards to my baby being born with a defective CFTR gene.

But look at all the other cards that came with that deck...we also got dealt cards of a beauty, intelligence, sassiness, lover of life and so much more. Fast forward 3-1/2 years and I gave birth to our gorgeous son who didn't get dealt the card of CF. No he got the card of Sensory Neural Hearing Loss and along with that card came cards of handsomeness, comedian, creativeness and more.

I also think that I don't ask that question because I know the answer. If I were to ask "Why did I have a child with CF? Why me?", well I know why because I know how. I know the science behind it. I know exactly what it takes to have a child with this disease. I know about genes and the mutations of them and I know that both parents have to be a carrier of one faulty gene and so forth. You see I really am a realist. I wouldn't ask "Why me?" in the form of expecting an answer other than the scientific backing of it. And when I ask "Why not me?", it's not that I wanted to have kids with CF or hearing loss it's just that I understand and know the answer to the "Why me?" question.

Now I will tell you a question I did ask; "How am I going to deal with this?" The first three years of learning that Andrea had CF were the toughest. I didn't know how to deal with it. You see we knew about David's hearing loss first. I was trying to deal with that news when 6-months later we get the other news. And here's the first question I asked when we got the CF news..."Why couldn't it just be her hearing?"

That question shook me to the core. I realized how quickly ones perspective can change. I was so sad that my beautiful son would not be able to hear well and possibly go deaf. I cried and sobbed over that. Then we get the CF news and BAM—a huge change in my perspective. Don't get me wrong, it's not like I was okay with David's hearing loss, it's just that if one had to pick between the two...well let's put it this way, hearing loss is not fatal.

Ironically I find myself comparing a lot of things to others and being grateful of the many things we do not have. That's how I answer the "How am I going to deal with this?" question. The answer is: you just have to! And I know this because in the long run it could be worse. Take some other diseases for example; Tay Sachs—it's a horrible genetic disease. Children born with TS rarely make it past 4-5 years of age. My little cyster is 16 which means I've gotten the joy of having her 10+ years longer than a parent who has a child with TS.

I'll never forget the words my husband uttered to me when I asked him how he handled the CF news so much better than me. Sure, he cried and was very sad about the news but he moved on leaving the anger and sadness behind a lot quicker than I did. He replied, "At this very moment someone is kissing their child goodbye for the very last time and we're not, so I'm happy we're not." Those words were powerful and so true. I just hope they hold to be true for many, many, more years to come...say 70-80 more years to be exact! In fact if anyone is going to kiss someone goodbye for the last time it shall be my kids kissing their parents goodbye after we've lived a long, healthy life watching our kiddos lead a long healthy life too! Why not, right?