Fearsome Beauty

Fearsome Beauty

Some days feel longer than others. Looking up at the many floors of the medical plaza, I took a deep breath. I knew it was going to be a long day. A day of tests, waiting rooms, and difficult things to hear. I wasn’t there for myself but for her. I will always be there for her. Although it is her time, this process and these tests could one day be mine. I walked into those rooms projecting strength but inside felt so much more. I feel fear and determination, and butterflies, and hope. I am eager to lend her my hand as many times as she needs to take it. I will travel to the ends of the earth for her, fight for her, and cry with her. I see in her my friend, my blood, and my hero.

This woman, this cyster lives her life in a way that I wish many more people would. She loves, lives, cries, laughs, creates, observes, endures, and overcomes. She lives to experience it all, loves her family and friends with her whole heart, cries when the burdens feel too heavy, laughs when life is whimsical, creates art of so many forms, observes people and nature for their true beauties, endures the punches that are continuously thrown at her, and overcomes these challenges with a strength and grace that few ever get to witness. She has the bluest of eyes, that could inspire the most eloquent of poets. Her gorgeous smile calls to the sun and implores it to shine. But this girl possesses much more than just outer beauty, she has inner spirit and fire. She is a force of nature. And it is my greatest fear that she is not appreciated and adored for all that she is and all that she adds to this world. My hope and mission is to help her conquer the one beast that lies in us both. The one that lurks deep within us and attacks us when our guard is down. I will not give up my hero without the grandest of fights. She is a part of me, and I am a part of her, making this OUR battle to win. Losing is not an option!

"BIG" question answered...

"Challenges are what make life interesting; overcoming them is what makes life meaningful."

I try to keep this in mind as life hands out its punches and I try desperately to roll with them. Things can always be worse! No matter how bad things seem or how far away the light at the end of the tunnel appears to be, the trials of life can always be greater. There are no great people in this world, only great challenges which ordinary people rise to meet. I believe this whole-heartedly. But before I can even begin to explain the ups and downs of my life, I have to go back to the start of it.

My mom recently asked me if I ever feel anger or resentment towards my parents for the choices they made. I suspect that these thoughts swirl around in their heads quite often. You see 32 years ago, my parents made the decision to carry on (to the best of their ability) with life and have more children...despite the immeasurable loss of their infant daughter (my older sister). She was taken from us at the very young age of 5 months old. Everyone has their burden to bare in life, my sister's was being the 1st child in our family born with CF. In a time when doctors knew very little about our disease and newborn testing was not performed, the diagnosis went uncomfirmed and was labeled "failure to thrive." I don't particularly care for that terminology. It sounds as if she did something wrong or failed in some way. I never had the delight or pleasure of knowing my sister, although we have an unexplainable bond. When I was younger, I questioned why she passed away but I was still living. I wondered if it was my fault in some way, or I was chosen over her. Those thoughts came with a fair amount of guilt and upset.

But regardless of how much I miss the sister I never knew, these feelings of mine have never been directed at my parents. They are the most loving, supportive, and amazing people I have ever known. My mom and dad have been thrown more curve balls than anyone else I have ever met. And through it all, they found a way to heal, carry on, and grow together instead of apart. I feel nothing but love, respect, and total admiration for my parents. Some may say or feel that rolling the dice with a disease like ours is reckless or irresponsible. I beg to differ! If I was given the choice today between 28 years of a wonderful, yet challenging life OR no life at all.....I think my choice is quite obvious. I choose to have my 28 years, my incredible family memories, my marriage to my fabulous husband, my time with my two amazing boys, and the chance to experience new things and live life. I do not resent them or their decision, I thank them for it. I have never been angry with them, just ocassionally angry at life. I have good days and bad, just like anyone else. The bad days are when I'm laid up in a hospital bed or have a PICC line in my arm. I despise the time away from my family and the feeling of little control over my health. In these times, I question things or find myself mad at my circumstances. I am also  upset for my sister. She never had the chance to live her life or make memories with her family. I resent the fact that she was taken from us before I had the opportunity to really know her. And it may sound selfish, but I desperately wish that my sister had been there for me to talk to, answer my questions, and share my sturggles. Instead, I am the oldest child in our family with this disease. I make a conscious effort to always be there for my two younger siblings, fellow CF warriors. We live together, breathe together, and FIGHT together. And I never want them to feel alone or lost without knowing that they can come to me.

But ultimately, the good days far outweigh the bad. The happy times and fun memories mean more to me than the ocassional dark thoughts. I always find a way to work out my conflictions in my own mind, so that I can tackle the task at hand. The task for today? Oh just the usual.... laundry, some cleaning, and playing with my boys :)