07 August 2013

Being Brave Exactly Where You Are.

"I was so brave last night mommy! I touched the bottom of the pool with mine feet!" 
A few weeks ago, these words greeted me through the telephone. I smiled a slow, proud, mommy smile and let two tears (yes, only two) slowly creep down my cheeks. The confidence in her voice was bursting through the air. I could hear that sparkle in her eye that lights up when she conquers something big and new. It was a small pool in Poppa and Grrrrmomma's backyard, she had cheerleaders all around and was covered in the armor of an inflatable tube, but in that moment, in that day, it was her Mount Everest.

There is a photo from November of 2011 of a tiny toddler hand on top of a mommy's hand. A small portion of her yellow cardigan evident in the square. It was taken in a moment where I felt broken down by circumstances beyond my control. She was on my lap in the backseat of an airport shuttle leaving the NIH (National Institute of Health) in Bethesda, Maryland. The previous three days I had gone through a never ending list of many medical tests and procedures. I felt like a lab rat. I received news that trip which was heartbreaking for me to wrap my brain around, that the muscle wasting in my esophagus had begun and was directly affecting my swallowing abilities. I knew it was coming, but honestly I felt like I wouldn't have to directly face it for a few more years at least.

I see now that the bravest thing I could have done back then is put one foot in front of the other, even if if required breaking life down into half hour increments. (I tackled life in those small chunks after my sister died.) Hindsight is great, isn't it? (wink) However, I came home and fell into a dark abyss, forgetting the ever recurring blaring theme in my life...doctors don't know everything.

When I was going through the preparations for my kidney transplant in 5th grade, I vividly remember my grandma asking numerous questions for me. She knew what I was thinking before I had the balls to give it a voice. (At 11 years old, I was quite ballsy, but not completely at my peak. Ha!) Every meeting with my team of doctors she would emphasize that the unknown is often the scariest. Which I feel is such a truth in the medical field, why Child Life Specialists are so incredible (and a big reason why I studied Child Life in college!) and needed and actually this notion covers a lot about life in general. I think we are scared about what we don't know.

Maybe the bravest thing you can do right now is to let go. Maybe the bravest thing you can do right now is to push yourself a little further. Maybe you need to take a step back, regroup, realign and refocus. Maybe you simply need to take a deep breath and power through like every inch of you is on fire and there is a life saving pond on the other side. Maybe being brave exactly where you are means something entirely different in your life than in someone else's, there is a good chance of that. And nothing wrong with it at all. Perhaps being brave in this season means speaking up for yourself for the first time ever, maybe it means saying no. Perhaps it means navigating new cliffs with spectacular views and convincing yourself you more than deserve every picture perfect morsel of eye candy.

There is an upcoming trial for investigating if daily growth hormone injections has any affect on muscle wasting in people living with cystinosis. After reviewing the details and risks a few weeks ago at the CRN conference, I will admit I'm more intimidated now than ever about jumping in head first.

But I'm going to take that chance anyway. I have nothing to lose but fear.

Maybe the bravest thing you can do right now is realize you were given this life (and it's infinite struggles and endless challenges), because you are strong enough to live it.

Tell me, what does being brave look like to you, exactly where you are?


  1. Being brave for me right now is making my Momma proud still even though she sometimes forgets I visit and sometimes forgets my name. As I watch her disappear and deteriorate due to her disease, I promise I will still make you proud Momma and not let fear or sadness take away the dreams you once had for me.

  2. This was so inspiring and beautifully written! Brave for me in my life right now is being able to go on alone. I moved back to the states from Korea ahead of my husband to start graduate school this fall. For nearly 2 years we have been each others world/support system in a foreign country and now I have to learn to stand alone again. Brave for me is doing it alone and I know I can .

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  3. This was beautiful...being brave right now is knowing that everything is going to turn out exactly as it's supposed to with our plans for our lives!

  4. This, my dear, was an incredible post... very heart felt and I thank you for it. Being brave for me right now is not only putting one foot in front of the other, but putting my ink pen to my notepad and writing out my goals, not simply daydreaming. I have been through SO MUCH and after it all settled, after I settled.. I got tired, exhausted and it is time for me to start LIVING OUT LOUD, ON PURPOSE again.

  5. i had been putting off reading this post for the last couple days because i knew it would completely break me down. and force me to face the fact that i have no choice but to be brave. i love you, so so so so (unending "so's") much. you really are one of the most amazing humans to ever walk this earth. thank you for this, even if it made me bawl uncontrollably because i'm afraid of what is going to happen next. being brave for me is facing head on the fact that my life is about to be uprooted for the second time this year and not falling apart over it. being brave is facing the fact that the people i used to run to when things got hard are no longer there and that i need to let them go. being brave is having the faith that someday things will be better than this and i won't always be alone. thank you for the beautiful reminder that all these things are not the end of the world. and that the only way to make it through this life is to fight for all the beautiful parts, no matter how many hard times come along.

  6. I love the concept of letting go as being the bravest thing you can do. Just trusting in the process of change is an epic thing to attempt. I envy those who are good at it!

  7. this is very inspirational! I am so happy you commented on my blog so I could find you! you are amazing and I love your love for life! I am excited to read more and get to know you and your journey.
    Thank you again
    Keia @ Improving Me with Keia Lee

  8. So inspirational, thanks for sharing and reminding me not to make decisions out of fear!!

  9. I believe the bravest thing I can do is to live life honestly, transparently, full of beauty and love and hard work, and just the way that I believe life is meant to be lived.

  10. Oh wow... So powerful! I loved every second of this post. I needed the reminder today, truly. I'm brave enough to be honest with myself. I am brave enough to recognize when fear is causing me to feel out of control. I'm brave enough to acknowledge this, keep breathing, and let it go. Thank you for reminding me. :-)

    (found via the SITS FB page)

  11. Love those quotes. thanks so much for sharing!

    visiting from Casey's blog :)

    Blessings and have a great weekend!


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