I WISH

For the parents ~

I wish...

A worry free day

a vacation from fear and guilt

strength to engage in any battle for their child

a money tree to help with expenses

hope for the future

piece of mind to know that their presence makes a difference

a hand to hold when the challenges seem endless

For the warriors ~

I wish...

the courage to try again

vulnerability to lean on others

a soul to comfort you during lonely times

the impulse to live life fully

a breath when you can't catch it

a hug when you never asked for it

more time, even when are bodies tell us they’re through

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

What Dreams May Come.........

The other night, I slowly drifted off to sleep. Suddenly, I was in a park full of beautifully colored trees. As I sat on a bench, I saw someone walking toward me, out of the corner of my eye. Their silhouette came into focus as they got closer and closer to me. It was then that I realized, I knew this girl…this woman. I knew that we had never met, though she seemed very familiar to me. I looked away, closed my eyes, and drew in a deep breath. Once I opened my eyes, I looked up at her and I knew……it was my sister. I stared into her eyes and said, “Kelly?” At that very instant, she smiled at me. “I knew I couldn’t get one past you,” she said. I wasn’t sure how I knew it was her. How do you know that you love your child? How are you sure that you want to spend the rest of your life with someone? YOU JUST KNOW!

Her hair was a sandy brown, her eyes a beautiful shade of hazel. They reminded me so of my dad, so warm and friendly. She had a confident walk like Bridget, and a nose just like Josh’s. And of course, when she smiled, she showed off her pointy Rose Alma chin. I was certain this was my big sister…..she was so beautiful. I stood up to hug her and realized that she was several inches taller than me. She wrapped her arms tightly around me and I began to cry. I had so many questions for her, I had no clue where to start. I needed to know if she was okay, if she knew how much we love and miss her. I wanted so badly for her to meet my boys and for them to know her. So I opened my mouth to let out the rambling of questions, when she said, “don‘t” She explained to me that I shouldn’t worry about her. She is happy and healthy and always watching over us. My beautiful older sister told me that she was not ready to leave us all those years ago, so she made sure to leave a piece of her behind. “I knew of the fight you had ahead of you and the strength it would take to overcome what you will face,” she said. As she held my hand in hers, she said that every time my lungs feel weak and I think I cannot take another breath…she will breathe for me. She told me that when the time comes that there is a hurdle that I just cannot jump over…..she promised to lift me up. She told me how sorry she was that she wasn’t here for me to lean on and to comfort me. I tightened my grip on her hand, unable to get out any words. Then she stood up, as if to leave. She held my face in her hands and said, “I do not want to leave, but I have to go.” “I know you have so many questions, but please know this………you have so much strength in you. You have to be strong for yourself , but protect Rosie and Dillon too! They need you more than you will ever know. I am so sorry that I am not there to protect you, but my strength lies in you. You and I will meet again, among the leaves.” I hugged her tight and told her how much I love her, how much we all love her. She turned and began to walk away. Then I heard a whisper say “tell them, my love is in your hands.” I looked down and opened my fists to find one orange and one red leaf.

Therapy

I'll say this again
but I need to be clear

I'm aware of your strength
your power over me at times

Some people say this isn't a fight
they would be wrong,
for we are in the fight of our lives

With an opponent so fierce
so determined to win

Wanting to take away our breath
secretly steal our youth
and break us down

At times you can take the round
But I force myself back up
refusing to back down

Dancing around in circles
winning and losing small battles

Unknowingly, you step into this ring
my furious ring of fire

I keep my fists up
ready to jump at the chance

Everything has it's weakness
lack of heart and soul is yours

You may look at me
thinking I'm weak and no challenge

That is the first mistake you make
underestimating what you see

I can be victorious
I will beat you down

For you do not know of my spirit
the strength and courage I possess
my willingness to die for this match

In return, giving those I love
and those I've never met
the chance to keep fighting

This is my promise
I will stand my ground
and never back down

wandering thoughts

Maya Angelou once said, "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."..............

I find this quote very interesting and true. Recently, I was contacted by a soon-to-be mother. She is 3 years younger than me, but was desperate for advice and information. She just found out that she and her husband are both CF gene carriers, so her child has a 25% chance of having CF. The woman was overwhelmed, terrified, and a bit lost. She knew nothing of the disease or what problems it could cause for her son and her family as a whole. Completely feeling for her mindset and situation, I couldn't help but write her back. We messaged back and forth several times, she had various questions. The thing is that when I was younger, I was so closed off about my disease. I never wanted to discuss it with anyone, just to ignore it really. But then I had quite the wake up call. It was a terrifying experience that changed me forever, but I truly needed to be slapped in the face.Things are different now. I am older, wiser (yes), but have also had more life experience. My life has taught me that it doesn't do anyone service or any good to keep my health challenges to myself. Instead, if I can reach out to people, speak out, and get involved it is somehow as therapeutic for me as it is helpful and reassuring for them.

Anyway, back to this woman. The things that I shared with her really seemed to help her. She was so appreciative and touched that I had taken the time to write a complete stranger. It made me feel incredible. I have not felt that happy since I had my baby boy 10 months ago. I guess, in part, I did it for selfish reasons. All those years, up until I was 18 or 19, I spent not taking care of myself, denying my situation, and causing my family grief. I never spoke to or reached out to anyone. I mean why would I help other people if I didn't even care enough to help myself. So I suppose I feel like in some way for me to help as many people as I can now and raise awareness and funding for a cure.....I am somehow making up for the past.

The communication that I had with this woman, Lisa, was so fulfilling. I mean I have felt the contentment and happiness of being a mom, wife, sister, etc. Those experiences are all amazing and rewarding in their own way. But this was different. This was me giving this scared, pregnant woman information and HOPE. I want to do this more........if what I go through in my life and the challenges I have come across and overcome , if that can be of help to other people in similar siutations. Then I think besides being Kason and Brandon's mom, I have found my calling :).

Life with CF

Someone once said that our greatest glory is not in never falling...but in getting up each time we do-

For the past 7 years, this has been my mantra. When I was 21, I was told by my new "adult" CF doctor that I would probably never be able to have kids. The chances of conceiving were slim and the chances of being able to carry a baby to term were even more bleak. I was so completely upset and devastated, as the tactless man threw a pamphlet at me. I didn't know what to do, but to walk out of the room and go straight to my car....where I cried. But after that, there wasn't going to be any more crying for me, not about that. I decided right then and there that no doctor was going to tell me what I was and was not capable of doing.

I am not made of steel, but I know I am incredibly strong. I have always found a way of dealing with all the various challenges that life has thrown my way. It does sometimes feel like I was forced into a boxing ring and keep getting knocked down. It was not my choice to be here, but I have been dealt my hand in life and am here nonetheless. The fight doesn't seem fair because maybe the disease is stronger or more powerful. Every time I find the courage to get back up, another punch comes my way. Or it feels like I am bobbing around in the ocean, struggling to keep my head above water and keep treading. But sometimes I get exhausted and my head drifts beneath the surface. Somehow, I always manage to gather ounces of strength to push my head upwards and take another breath.