ING

wanting my body to cooperate

needing to conquer this challenge

seeing the hurdles that lie ahead

hoping for the strength to jump

longing for simpler, healthier times

striving to live each day fully

envying those with perfect lungs

waging a war for us all

aching when they suffer

wishing it was me instead

balancing the light and dark times

basking in the warmth of the sunshine

crying alone when beat down

fighting with every ounce of my being

appreciating the family I was given

surrounding myself with love

Things I need

food to nurish my body

water to quench my thirst

oxygen to fill my lungs

exercise to keep me active

love to fuel my being

creativity to feed my mind

laughter to energize my life

challenges to balance things

family to strengthen my spirit

confrontation to remind me of diveristy

sunshine to keep me sane

chores to feel productive

medications to supplement my health

date nights to stay connected to my soul mate

humor to distract me from reality

hugs from my boys to warm my heart

nature to make me aware of beauty all around us

connections to make me feel alive

and comfort even when I don't ask for it.

3 Things...

3 THINGS…

(the thoughts of a CF patient by Lindsay Conde)

Do you ever feel like a sheet of ice floating around in the arctic? Cracks develop, sections begin to melt, pieces start to drift away from the base…..all the while, you feel helpless to stop the chunks from being washed away. Well, maybe an ice sheet isn’t the best analogy for me, I don’t think of myself as cold or frigid. But the comparison works on a certain level. Sometimes, because of stress or challenges or just life, you begin to slowly lose pieces of yourself. These parts are vital to the survival of the ice sheet or person as a whole. A big, strong slab of ice will fare much better in the dangerous waters of the arctic than some tiny, thin slice of ice. So how can we stop this? How can we keep ourselves in one piece through the calm seas AND tidal waves of life? Because, make no mistake, they are both out there waiting for us…


For me, the answer lies in what holds me together and keeps me going. What is the “crazy glue” in my life that allows me to keep on, keeping on?


In three words………FAMILY, LOVE, and LAUGHTER!


~ My FAMILY is everything to me. I have an amazing husband and two beautiful little boys. I am thankful every single day that I have these three men in my life. But my deep family connection began long before I ever met my husband. I grew up in a beautifully large and unique family. I have two parents that have been married for 37 years (to each other, lol), created a strong family foundation with their blood, sweat, and eternal love, and would do anything for each other and their children. These parents of ours CHOSE to have a big family, resulting in 13 pregnancies. Years later, there are 10 of us “crazy” kids/adults that represent our clan. The oldest is 36 and the youngest is now 14. Out of 10 children, 3 of us spend each and every day fighting Cystic Fibrosis. The disease does not afflict every member of our family, but it does affect us all. We may be older, have separate and busy lives, and sometimes even conflicts with each other….but one thing has always remained the same…our love and devotion to our family. We have made a point, as a family, to celebrate life’s moments (big and small) and supporting each other through life’s disappointments and challenges. Individuals throughout my life, have teased me about my big family or inquired as to whether or not I would have such a large family myself. The jokes never really upset me much, because though our family is big in number (and growing constantly) it is also full of soul and so much heart. Each member of this circle brings along with it such unique personality and a different human dynamic. And although we may not always see eye-to-eye, the circle would be far from complete without each individual’s contribution.


My husband, Alex, and I have begun and will continue to focus on the same priorities for our own little family. Yes it is true that money is what motivates our society, jobs are a necessity, and bills have to be paid. But life should not revolve around such things, if so, it is a life wasted. We want to instill in our boys the strong family ties, devotion, and unconditional love that we both believe is so essential to a successful and happy life. It is true that “Home is where the heart is.” So I keep my family forever in my heart, because they are where my home is!


　


~This brings me to LOVE and LAUGHTER!! I learned at a very young age that laughter heals, memories last forever, and love is more powerful than hate. Love makes the world go round. The world can move for love and kneels before it. Don’t get me wrong, hate is also a very powerful thing. But love sets you free and opens new dimensions within yourself, while hate closes you off and hardens you. Now, that’s not to say that my life and it’s many challenges have been all rainbows and skipping through meadows. I have had my angry or bad days. Those days, I spent wondering “why me?” or focusing on what hurdle I would have to try to leap over next. Some of them have even revolved around crying and thoughts of what my children will do without their mother. It’s funny, when you love someone so much, you almost become conceited and selfish about that love. You feel like that no one can love them, look after them, and take care of them like you can. You want them to truly know you, love you, and remember you forever. But the truth is (for me), my time is better spent living each day one at a time, than thinking ahead to the heartache I may leave behind. I can better serve my husband, my boys, myself, and the rest of my family by making memories, laughing, crying, dancing, snuggling, enjoying the little things, and most of all….living. Because, in the end, no matter how much time we have together, the memories are what we are left with…so we have to make them unforgettable! I have made the choice to live, laugh, and love with my whole heart. And if I make that happen, then I will have no regrets in my life.


Time does heal all wounds, but laughter can sometimes be the best medicine. A good laugh with friends or family or even at yourself can unburden your mind and give you back a piece of your happiness. Someone once said, that if they didn’t laugh, they would cry all the time. So it may seem silly, but I choose to lighten the mood as often as possible, especially in challenging times…with a funny joke, stupid impression, or even just a silly face that makes my boys giggle. We may not have control over the hand we are dealt in life, but we “for damn sure” have control over how we choose to play it! So, while we are forced to make car payments, pay rent, and buy groceries………I’m going to play my cards as follows….


*Drive that car to take amazing trips with my boys, like to the Chattanooga Aquarium this weekend.


*Decorate our house like crazy with lights and trees and tinsel, to make the holidays exciting and special for my family.


*And use those groceries to create delicious (and mostly healthy) meals that will bring us to the dinner table together and nourish our bodies and souls!

SOME...

At this moment, there are 6,767,797,804 people living on this earth.

Some of them are running scared
and some are coming home
some tell lies just to get through the day
and some are just now facing the truth
some are bad people struggling with good
and some are good people struggling with bad
some are beginning to fall asleep
and others are finally waking up
some are closing their hearts to love
and some are just now opening up
some have years of experiences to have and mistakes to make
and others desperately plea for more time
some have built a legacy of money and success
while some have placed their faith and future in family
some live their life guarded and afraid
and some live every day like it could be their last
some are independent and free
and others need a shoulder to lean on
we are so different, yet share so much....
we all need air to breathe and food to nurish
we need fire to warm our bodies
and love to warm our souls
we need compassion from our fellow man
and understanding from our loved ones
we need room to make mistakes
and forgiveness when we are wrong
we need open arms when we are scared
and a willing ear when we need help.
There are 6 billion, 767 million, 797 thousand, 804 souls on this earth today.


And all you need is 1 to believe in you!

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 :)

The Clearing of the Fog

Sometimes my mind and body become cluttered by a kind of fog. It’s a slow confusion that starts with a weak moment and results in a sort of slump. In this hole, I forget my strength, my willpower, even my true self. I get lost in the endless list of responsibilities, daily chores, but mostly my physical challenges. It’s not easy being 28 years old and having to deal with Cystic Fibrosis, arthritis, chronic sinus problems, multiple surgeries, osteopenia, and the next bug that comes along. It sucks, quite frankly. But in this fog, I lose sight of myself, my fight, and my true focus. I suppose it’s normal for an individual to lose focus from time to time. I’m sure that everyone does. However, I have learned over the years that no one can pull you out of a rut…..you have to pull yourself out!

The other night, I had a dream. And this dream woke me up and reminded me of my reality. My life has its’ challenges, that is for certain, but it also has its’ many blessings. I am not a religious person…I do not believe in a “god.” But, I do believe in loved ones watching over us, the strength of the human spirit, and the power of love. I believe that brick walls exist to weed out the people who don’t want it bad enough, thank you, Randy Pausch <3. I believe that our family members are kindred spirits, even soul mates….that are in our lives to help us grow as human beings and be the strong foundation in our life that will always be there to support us. I believe that sometimes bad things happen to really good people, and there may never be an explanation as to why. I believe that life is short, so it’s important to: have few regrets, make great memories, try new things, and live like you were dying (thank you, Tim McGraw). I believe that there can NEVER be too many hugs, I love yous, kisses, spontaneous moments (remember mom jumping in the creek with all her clothes on, I DO!!), compliments, heartfelt apologies, and encouraging words! I believe that there are no mistakes, just learning experiences, if you choose to see them. I believe that compassion could solve the world’s biggest problems. I believe that things can always be worse, and it serves us best to always keep that in mind. I believe that no one is perfect, but there is someone put on this earth who is just perfect for us (my Alejandro). And lastly, but definitely not least….I believe that there are two beautiful angels, who came into this world by way of stubborness and utter determination. But these two boys bring to my life pure joy, happiness, light, and laughter. They are my legacy, my loves, my true purpose….and I will never be able to express to them just how much they mean to me. BUT, I will spend every day of the rest of my life trying to.

In the meantime, I have remembered (or been reminded), that life is not about wallowing in self pity or focusing too much on what challenges may lie ahead. Life is about….
Dancing like no one is watching
Singing like no one is listening
Laughing like there’s no tomorrow
And remembering to ride, never being worried about the fall