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.