“In a world of competing causes some voices get drowned out.” -silent for 65

Interview with a Cystic Fibrosis Mom.

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Have you ever experienced a moment so reverent and breathtaking that you were simply speechless?  I can say with extreme gladness that I have had moments such as this throughout my life.  Standing at the edge of the ocean with the waves washing up at my feet, just gazing out into the greatness before me.  Seeing the colors of the sky right before the sun sets when they are that gorgeous shade of orange and pink, representing the end of another day.  Sometimes we are captured by a moment such as the ones I’ve described, at times it can even seem that something in the silence changes us.  I often find, for myself at least, that some of my greatest lessons are learned in, or from silence.

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Ecclesiastes 3:3 & 3:7-  “For everything there is a season, and a time for every matter under heaven…   a time to tear and a time to sew, a time to keep silence and a time to speak.”

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“Maybe the most helpful thing you could say, is not meant to be said with words.” – M.K.

 

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Over the last year I have started volunteering to raise money and awareness with my friend, Sarah, whose daughter was diagnosed with Cystic Fibrosis about a week after she was born.  Without planning, or knowing about the fact that two of my sisters had already decided to do the same, I simply chose to call Sarah up one day and get involved.  Not long after our first phone call since we were in high school together, Leighton’s Legion was formed.  We have all spent the last year working tirelessly to raise funds and awareness for Cystic Fibrosis.

 

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 I am excited to say, this year we have donated 11,300.00 to the Cystic Fibrosis Foundation. We also did a fundraiser for one of our favorite charities, The More Than Just Me Foundation.  I would like to encourage you to check out http://www.mtjm.org and consider making a donation to benefit people with CF.

 

If you would like to make a donation to our Cystic Fibrosis Campaign go to:

http://fightcf.cff.org/site/TR?company_id=2362&pg=national_company

or http://www.cff.org for a general donation.

“Work hard in silence, let your success make the noise.” -anonymous

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With the year coming to an end, Leighton’s Legion is wrapping up the fundraising with care packages for Leighton’s Cysters and Fibros (this is what people with CF call each other to show they are connected to one another) who are in the hospital or homebound.  When I saw someone posting about the 65 hours of silence for CF on Facebook, I joined because I will do whatever it takes to raise money to research for a cure.  For me it’s truly as simple as that!  I can see and comprehend the reasons for participating others have posted, and I also understand why someone in the CF community would not want to “go silent for 65”.  That being said, we are all fighting for the same cure.  I hope that Leighton’s Legion will always do so with respect for the opinion of others.  I want us to always have a kind word for each other and those we meet on this journey.

“See the light in others, and

 treat them as if that is all you see!” – Mark Twain

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Sarah wanted to write something to post on social media to break the silence at the end of 65 hours.  For some reason she thinks that I am a writer, so here I am once again, trying my best to reach just one person with these words of mine.  I thought we would try something a little different from the posts we usually make about CF.  I decided I would interview my sweet friend and ask her, “why the silence?”, along with a few other questions

Why support 65 hours of silence?

I chose to go silent, because everyday someone becomes silenced by this disease.

Some people learn through a less aggressive approach.  Through silence they become more aware of their surroundings.  I believe in creativity.  I believe there are some people whose attention will be grabbed by a campaign that is screaming for a cure.  I also believe that there are those who will respond to the silence.

I participate because everyday my child sits in silence with a mask on her face, inhaling medication to keep her lungs strong so she can breathe.  

I am willing to do whatever it takes to gain even just one more person’s attention to this disease.  I scream from the rooftop, so to speak, daily. Shutting up for a few days in hopes to reach someone who may not have noticed otherwise, why not?

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If you had to describe what is CF to someone who has never heard of it before in 100 words or less what would you say?

Cystic fibrosis is a genetic disease that affects multiple organ systems of the body.  Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus.  Saliva and sweat glands may also be affected.  Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs) or externally (e.g., sweat glands).  In cystic fibrosis, these secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection.  The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another.  Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result in poor growth and poor nutrition; and obstruction of the intestines.  Cystic fibrosis is  progressive.

Over time it causes damage to vital organs such as lung, liver and pancreas. This eventually results in life-threatening/taking complications.

Why does the CF community rely so much on “Awareness” and charitable donations?

Without awareness knowledge would never be gained by those outside of the disease.  There is currently no federal funding for Cystic Fibrosis, so unfortunately it is up to those affected/touched by this disease to become the voice of awareness and advocate for the cause.

Without these advocates, this disease would stay hidden in the sidelines and life saving advancements would remain at a stand still.

Tell me about Leighton?

Leighton is a vibrant, energetic, little girl.  She loves everything pink, and all things frilly…

She is a princess with a warriors heart!

She lights up every environment that she enters! She loves people and her passion for life inspires every person she encounters.

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Leighton’s cystic fibrosis diagnosis was confirmed 7 days after she was born.

The initial signs were present just hours after her birth. She lost almost 2 full pounds the first two weeks of life due to cystic fibrosis induced pancreatic complications.

Her body is constantly fighting against itself.  Ultimately this resulted in what’s considered to be ” Failure to thrive” without proper medication and heavy doses of vitamins Leighton’s body will starve.  In the spring of 2013 Leighton began to develop CF related liver complications.  She takes daily medication to combat this.

 

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In order to keep Leighton’s Lungs and airways healthy she must sit through 2 to 6 treatments daily.  Treatment seasons consist of inhaled medications along with either hand percussion therapy or vest treatments.  Each treatment session can take up to 40 minutes to complete.

If there was one thing you could say to the entire world about CF and your family’s journey, what would it be?  (I’m sure you will have more than one)

There is a quote that I have hung on to for years.  Every time I am asked this question it’s the first thing that comes to mind

“Life is not measured by the number of breaths we take, but by the moments that take our breath away. “

Leighton reminds us to live!  She reminds us to value the days the Lord gives us.  To slow down and take in each moment.

To appreciate more and to complain less.  To LOVE with our whole hearts.  To stay close to the Lord.

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She reminds us to remain in Hope and have full and complete Faith that no matter what lies ahead, with the Lord by our side we can overcome anything we are facing..

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