"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?