Finding Your Voice

The voice.  It is the purest reflection of one's self and is the instrument from which our passions pour. It carries our emotions, gives wings to the thoughts that resonate within, and transforms our ideas into purpose.  It embodies the complexity of our entire being, yet it is born out of a simple beautiful breath.  

Defining Who I Am

Singing has been at the very core of who I am for as long as I can remember. Just like CF, it has always been a part of me. It is the very spark that lives within me and renews my soul. While there is truly nothing else that feeds my soul the way singing does, it isn't singing itself that has made my life so incredibly full.  It is the people I have gotten to make such amazing music with and the act of lending my voice to something greater than myself that truly gives meaning to my life. For the last 10 years I have passionately drown myself in studying music: receiving my bachelors degree in vocal music and currently pursuing the last months of my masters degree in vocal music. It hasn't been easy by any means, but the reward and inner joy I get from feeling the air pass through my lips and the song of my heart being painted upon each breath is incomparable.  To be honest, my ability to sing has always meant that I am still alive both physically and mentally.  It has represented that CF is not winning: that I am stronger than CF. Of course, CF has made singing difficult at times, but that just means with each painful breath I know I am alive.  It has forced me to treasure those moments when my body feels "normal" and the air seems to just flow from within.  But it has also made me fight even harder through those moments I feel powerless and as if CF is trying to destroy the song of life that sustains me. The entirety of who I am has been defined upon my voice and my pursuits as a musician. So what do you do when that very thing that has defined you is torn from your life? When that very thing that feeds your soul and gives you life seems merely impossible?

Sing A Song

I sang for the first time in over 5 months just a few weeks ago. There's nothing I've been mourning more these last few months than the loss of my voice. For much of that time it was difficult to speak, let alone sing. There's nothing I wanted more desperately than to just merely open my mouth and have a note escape from my lips. Not only was I desperate to breathe, but I was desperate for the song that lived within to be freed again. I always knew my voice would be undermined by CF sooner or later, and ultimately be devastated because of it, but I never could have prepared myself for the heartache and loss I've felt over it actually happening. It seems I've had to relearn just how to simply breathe again, not to mention sing. But, I am singing again. I know it will never be the same, as this last CF battle has left my body so different. But I am singing and that's all that matters. Whatever the future may hold, the voice within me will always continue to sing, it just might be a different song. 

1 Year

Regardless of what CF has stolen from me, the song within me will be ever present.  I will forever be finding my voice, in whatever medium that may be. A year ago I published the first entry to this very blog. Little did I know what would lie before me. I had started the blog as a way to allow those I know and love into my life and see who I really am: to unveil a part of me that I had hidden from the world my entire life. It had become more and more impossible for me to keep hiding and running from the realities that are CF. This blog is not about me, and I realize that even more every day. It's about all of you: about the goodness, the love, and the endless support you have all shown me. That my voice's purpose is to reflect the beauty that is so present in every breath I am given. 

I've always defined myself by the use of my voice: the expression of the song that lives within me and that illustrates my life. I am realizing that I have not lost my voice at all, but instead it is just being used differently. That finding my voice is merely looking inside myself, breathing bravely, and sharing the song that fills my soul in spite of CF. 

Thank you to each and every one of you for being a part of this incredible journey with me: for believing in me. I am left humbled beyond words and filled with endless gratitude for each of you. My life is so beautiful, and I am truly thankful for each beautiful breath that I have been given and each song I've been able to sing.   Love to you all.  

Sing it, shout it, write it: breathe bravely and find your voice. When you find it anything is possible.



Tomorrow is April 1. Are you ready? 
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A Gift

Even after all this time

The Sun never says to the Earth,

"You owe me."

Look what happens to a love like that.

It lights the whole sky.

Every day our lives are consumed by a whirlwind of demands that surround us. We get to the end of the day and very rarely take a moment to look back at the wonders of our day and give thanks for the gift it was: our lives become lost in the chaos of the world around us.


I am just as guilty for letting the chaos and demands of the world engulf me, rarely taking time to stop at the end of the day to relive all the goodness I encountered.  I get swept up in looking towards tomorrow, forgetting what a true gift today was and all the people who made it so.

I challenge you, as do I myself, to take a moment to look back to yesterday. What acts of kindness and good filled your day?  By who?  It can be the simplest of gestures: a smile from a stranger, an unexpected phone call from a friend, a genuine compliment, a thoughtful gift, or something nice someone did that wasn't necessary.  There are acts of generosity and kindness all around us every day: we just have to slow down and make ourselves aware of their abundance.

Pay it Forward
The more and more aware I become of the abundant kindness that surrounds me, the more overwhelmed I become with guilt.  What am I doing to deserve such kindness, and what am I doing to pay that kindness and generosity forward?  Can I share enough goodness to equal or exceed what I have been shown?  Do people know how thankful and humbled I am for their kindness?  More importantly, how can I share such kindness? How can I pay it forward?

A Gracious Gift
As I was in the midst of writing this blog, another immeasurable act of kindness was shown to me: an act so selfless it takes my breath away and leaves tears streaming down my cheeks.  It is so incredible I must share it with you all.

An amazing musician and composer I so greatly admire and respect wrote to me a few months ago asking if she could compose a piece inspired my writings.  I was completely shocked and so incredibly humbled: even more so, in disbelief.  My writings? Really?  During the past couple of months this incredible woman would write to me saying, "it's not quite perfect, yet," or "it hasn't found its voice."  What humbles me even more is I know the amount of herself she poured into writing this piece and finding "its voice." She had countless other masterpieces to write, but she took that time to do something life changing for me.  Again, it leaves me speechless and in tears.

What did I get to hear and see this week?  A finished orchestral composition entitled "Breath." As I listened for the first time, I was overcome with emotion and moved to tears.  Each note so delicately and perfectly placed creating an incredible masterpiece: I cannot wait until its beauty is shared  with the world.

Who is this amazing, brilliant, strong, talented, generous, and selfless woman? She is a composer, musician, colleague, and most of all, a dear friend: Deanna Wehrspann.  You have given me one of the greatest gifts of my life, and your kindness will forever live in my heart.   Thank you, Deanna.

Challenge
Today, I challenge each of you, and myself, to go out of your way to show someone kindness.  Now, I challenge you to do something everyday.  Can you imagine the amount of good in the world if we all focused on sharing kindness? You don't have to write a symphony, but the simplest act of kindness can make an enormous impact.  My life is overflowing with abundant kindness and I am so very grateful.  Love to you all.

What kindness have you been shown and shared today?

We'd love to hear about the good that fills your day: kindness is contagious! 

Share moments of kindness from your day either on my facebook page, leave a comment on the blog, or drop me a note at breathebravely@gmail.com  

Just Jeanette

[Blog entry created by Mark Bonnema]

Ashley as "Just Jeanette"

This past weekend Ashley sang a role in the comedic opera Too Many Sopranos. She was marvelous! The notes flew off her vocal cords and tongue with seeming ease and definite grace. I was so proud of her! She did it and she did it well. I am not an opera critic, and I must admit that I am a bit partial, but I thought the performance was wonderful. Congratulations Ashley, aka “Just Jeanette,” and congratulations to the entire cast and orchestra that was involved.

I watched for weeks as Ashley spent hours practicing, studying her score, and traveling daily to rehearsals. Finally all of her hard work was coming to fruition and it was the week of the performance. What happened but her voice began to betray her and threaten to ruin all she had worked for! Tuesday, Wednesday, and Thursday of this week, Ashley could barely speak.  Of course, Ashley did not give up, did not fret, nor become despondent.   

Rather, she kept her spirits about her and regained her lost voice with the use of tea, cough drops, rest, oral antibiotics, and steroids (prescription) in time to sing performances on both Saturday and Sunday.

Just Jeanette and Nelson Deadly

I do not know from where Ashley draws her strength and determination. I often think there must be a wellspring of life and energy within her, the way she carries on with determination day after day. Call it personality, natural endowment, or a blessing, it is impressive any way you frame it. I love her for it and I admire her for it.

Dreams

This weekend Ashley accomplished a lifelong dream of hers. She sang a role in an opera.  I am very happy and pleased for her. I certainly hope this is the first of many operatic roles she has the joy of mastering and sharing with the world.

The divas

Sometimes realizing a dream comes at a price. While Ashley works to accomplish her dreams and realize her hopes, CF is working equally as hard in her life and body. It never takes a day off. It constantly holds the threat of infection, fatigue, and pulmonary bleeding over her head. With the opera done and a dream realized, Ashley must now turn her attention to coping with CF and dealing with her body’s ailments. This morning Ashley goes to the hospital to have a PICC line inserted. IV antibiotics will follow sometime early this week. An infection is beginning to brew. It is not fair that Ashley needs to pay such a price just to pursue her dreams. I wish it were not so. I am so very proud of you Ashley, you worked hard and with a great deal of determination and persistence, you accomplished a dream.

What dreams are you pursuing? Are you willing to pay the price?

A special thank you to JoAnn Lambertz for the great photos used for today's blog!

*Ashley had asked that you all wear purple today to show the world your connection to CF.  Please share with us a photo of yourself and loved ones sporting their "purple pride."  You can either tag Ashley on Facebook, or send an email to ashleyballoubonnema@gmail.com. *

Harmony & Dissonance

Harmony:

1. The combination of different musical notes played at the same time to produce a pleasing sound.

2. A pleasing combination or arrangement.

Dissonance:

1. A mingling of discordant sounds; a clashing.

2. A lack of agreement.

The Early Years:

I was a month old when I was diagnosed with CF.  For much of my life, CF and I lived in complete harmony, without any epic moments of dissonance.   CF and I grew up together, very seldom getting in each other's way.  For the most part I never thought about CF and what it really meant to my life.  Sure, my childhood might look different than most kids,' but it was still wonderfully filled with school, swimming lessons, birthday parties, basketball camps, little league, and slumber parties.  Looking back at my childhood I realize how many wonderful people I was surrounded by and the memories I will forever hold dear.  I wouldn't wish for any other childhood. It has made my life what it is today: a composition of harmony and dissonance. A beautiful song.

When I was born newborn screening for CF was not mandatory.  Because early detection is so vital to the success of treating CF, newborn screening is now mandatory in all 5O states.

How is CF diagnosed?

"Sweat Test — If a person shows symptoms of CF or if a baby has a positive newborn screen for CF, a doctor may order a sweat test. This simple, painless test is the best way to diagnose CF. It measures the concentration of salt in a person’s sweat. A high salt level indicates CF.

Newborn Screening — Newborns screened for cystic fibrosis can benefit from early diagnosis and treatment, which can:

•    Improve growth;


•    Help keep lungs healthy;


•    Reduce hospital stays; and


•    Add years to life.


Genetic Carrier Testing — More than 10 million Americans are symptomless carriers of the defective CF gene. This blood test can help detect carriers, who could pass CF onto their children. To have cystic fibrosis, a child must inherit one copy of the defective CF gene from each parent.

Each time two carriers of the CF gene have a child, the chances are:

•    25% (1 in 4) the child will have CF;

•    50% (1 in 2) the child will carry the CF gene but not have CF; and

•    25% (1 in 4) the child will not carry the gene and not have CF"

If my life were being written as a musical composition, the sweetest melodies and harmonies would come from those relationships and memories that live within me.  Each of you is a beautiful note in the song of my life that is continuing to be written.  

What beautiful harmony is your life making?

Thank you for the amazing response to this blog.  I am so incredibly humbled by the love and support you have each so graciously out poured.   Love to you all!