Friday, June 24, 2011

Letter to a Superhero

Dear Jackson,

Today I write to you with such pride and joy. Today I celebrate the amazing little person you are. Actually, there is nothing little about you. You have a huge heart; you love all of life and you touch the souls of those who come into your presence. You have a huge spirit; you ignite some kind of brilliance when you're in the room. Your energy, charisma and spark bedazzle me....everyone. You have a larger- than -life handle on all of the challenges that God has gifted you with and have done so with a grace and poise so large, I often question that you are only a small child.

You are a teacher. Through the last 19 months...half of your life, you have taught Mommy, Daddy, sissy and Bubba...all who have witnessed and pulled for you along this battle, what it means to have courage. You have shown us what it means to be brave. You have exemplified the human spirit and surpassed expectations. You have given us a new window through which to view life. You have changed how we see pain, struggle, disappointment and difficult times. Because of your tenacity and superior capacity to accept what is and experience life as God has planned for you, we are better people. We aspire to be like you, my brave one.

Yesterday was a miraculous day. It was a gift. It was an answered prayer...but you knew that, didn't you. In the bliss of the bath the night before, in the high energized laughter and alertness with which you entered your cast the calm and serene presence of your being through the waiting and the chaos, you knew. You were telling me through your joy, "Today is the day!", and I was apprehensively listening; afraid of lifting my spirits to the good news of the day, mindful of what the doctor could deliver in his post-op report, giddy with anticipation to hear what we wanted to hear and were afraid to let ourselves embrace, I was listening. You knew.

You feel pain and soreness and fatigue today from what is the total of all sums: all of the surgeries, the pokes and prods, the early rising mornings and the restless post-cast nights. What you feel today is the symbolism of what Daddy and I have felt for you since your diagnosis in September of 2009: a guttural punch lasting far too long, taking our breath away and leaving us paralyzed with fear and sadness. I watch you struggle today; the way you can hardly move with ease...the moans you made as you tried to find comfort in your sleep last nite, the inability to maneuver and manipulate the way you did two days ago...your tears as you ache and express how your cast is hurting you. These struggles...these post cast-day blues, of which you've never endured before in all of the past days( and I,m shocked and amazed you haven't), I think are a message to us. It is as if God is giving us this pain and frustration to remind us of what we are grateful for. That after this 12 week road ahead, there will be no longer, these kinds of days, my sweet warrior. Today is a gift and the days after....for they will serve to give us perspective and fortitude. They will give us empathy and compassion for our friends who will still endure. They will give us humility and hunger for the turn in the road that lies ahead. They will not last long and THAT is the miracle.

Congratulations my sweet boy! This is your last cast. I can't even catch my breath as I write it. I say it and yet it doesn't ring loud enough to express my elation and relief. I wonder if as you held my hand while we rested in your bed last nite...trying to find solace from the storm, did you hear me weep? Your quiet, sleeping breathing was my reprieve. Your tiny fingers wrapped around mine was a whisper to me that it was over. That THIS part, was over. Though you were clinging to me for safety and comfort, it was I, my brave boy, who was refusing to let go of you. I craved your still. I cried for your story. I celebrated in silence, nurtured by my own salty tears, that you have overcome the odds..the obstacles and the agony.

Your story is one I read with awe and inspiration, Jackson. As it unfolds and lights the way for it becomes a life handbook for your family and friends to follow and learn from, I am filled. I am filled with hope. I am filled with a purpose to continue to support you and guide you, protect and provide for you, advocate and communicate for you and those who fight this battle of Infantile Scoliosis alongside of you. Though the noise of the battle is not over, the fight of the soldier is intact. are a superhero. You have special abilities and powers of strength that conquer what evils lurk. You have an uncanny ability to fly and leap and soar where no others are able. You have the responsibility to pave the way and lift others from the shaky ground in an attempt to bring them to a much safer and rested valley. I cannot wait to watch you fly! ...and I will stand along the sunset, following your beautiful body with your cape bellowing behind you as you fade away into the horizon, and I will say with love, "That is my son."

I love you.


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