It's Not What You Think...

It's Not What You Think...

It's not what you think...lady in Taco Bell. There you are sitting in the corner booth, a clear view of my family as we sit and enjoy the "Bean burritos, no sauce no onions" we have waited for all day. Its not what you think. This little girl, sitting next to me, her voice rising in a cry of frustration. I can feel the judgement and presumption emitting from your eyes from all the way over here. While on the outside she may appear to be having a good 'ol fit. Complete with whining and tears. Its not what you think. She isn't fussing over usual things, like not getting dessert or wanting a toy. I see it in your eyes, "She is too old for that kind of fit." What you don't realize is, she is TOO YOUNG to be fighting for her life....

Your eyes follow us as we move about, refilling our drinks and getting extra napkins for the bits of beans that seem to escape the corners of her sweet mouth. It's not what you think. I can see you lean forward and whisper to the man opposite you, he turns to look too and you both whisper and keep glancing over here in judgement.

Its not what you think...Mom with three perfect kids at Walmart. We seem to meet over and over as we traverse the path of purchasing. Your three children all clean and pressed, "Please's" and "Thank You's" fall from their well washed faces. Your eyes look up and down her frame. Eight years old and now hair flying around her shoulders, begging for a snack. All four of you look her up and down and your unspoken thoughts speak loud and clear. "You clearly don't need a snack?" It's not what you think. You don't see the fruits and vegetables, and whole wheat bread in our Walmart cart. No sugar diet. You don't know about the "bump" or the myriad of dietary components we try. Its not what you think. You aren't there when she skips desserts while others around eat them. You aren't there when she asks for broccoli and cauliflower for dinner. It's not what you think...

Its not what you think...Cancer isn't always about courageous faces and fighting big battles. Its staying home from church when you really want to go because you are so worn down you might catch even the smallest bug. Its taking medications that cause your body to be ravenously hungry, to gain weight without cause and retain fluid so you cheeks are round and tender. Cancer is about shopping in sizes 3 or 4 times bigger then you ever have and trying to sneak XL into the dressing room for her to try on without her seeing the tags. Cancer is walking unsteadily all the while trying to run like you used to. Cancer is unexpected trips to the doctor, preferring to take med's in pills instead of liquid (eight year old shouldn't have to know that preference). Cancer is finding out life is unfair way sooner then any child ever should.

Its not what you think...Its about wondering if every little twinge is a new symptom. Its your family trying to stare at you every second, to soak your face in and watch for any trouble, all the while trying not to stare at you so you wont feel weird. Its about your siblings and cousin not understanding whats happening to you. Physically. Emotionally. Why you are gone all the time and why you cant get down on the floor and play like you used to. Its needing to drink out of a straw so the 7-Up wont dribble down your chin. Its your Sis running all over to find you a straw so that 7-Up you just bought out of the vending machine wont make you cry when you realize you cant just drink it like you used to.

Its not what you think...Its not recognizing yourself in pictures...mirrors. Petite, agile, athletic replaced by the simple joy to be able to skip again. It people you know and love seeing you across the grocery store and turning their cart quickly in order to avoid you....not because they are unkind or uncaring. No. They are amazing. It's because Cancer is uncomfortable. It causes people not to know what to say. You feel like you should but you don't want to mess up so you just avoid it all together. I know. I have been there too. We understand. It's ok. We don't judge you.

Just don't judge us world. You don't know that that little girl who you see as whiny and throwing a fit, just finished being the 16th person in the whole world to have catheters tunneled into your brain stem to deliver chemo into her central life center. That little girl who you think might eat too much, or exercise to little? She is in the fight of her life. Her cries don't come from spoiled-ness...they come from a scared little girl who just misses normal. She misses planning for spring, planting her garden, playing with her puppy and signing up for soccer. Instead she is planning her next trip to London for more chemo into her brain. She is scheduling doctors appointments, and taking chest x-rays. She worries about why her left arm is weaker and her cough not as strong.

Its not what you think. This picture in front of you. Lady at the doctors office who raises her eyebrows as we stand outside the changing room. Her little wails of "No mommy I don't want to put that gown on to take the x-ray! It looks horrible!" Its not about the horrible gown at all. She isn't vain or stuck up. Your judgmental expression and rolling eyes turn my stomach. Its not what you think. You don't know she just drove into town after flying home from London. Not from a trip for fun but to give her a chance to grow up...That she has seen the inside of more doctors offices in the past few months then anyone adult ever should.

Its not what you think. That smile on her mommy and daddy's faces. The love they have for this little girl...the vastness, the depth. Indescribable. There are no words for how far they would go, do go every moment. to try to create normal while fighting the most lethal form of pediatric cancer. To try to maintain fairness between siblings when nothing about this is fair. They are heroes...

A Daddy called as a pastor to shepard Gods flock, only wants to protect this, his own precious lamb. The patience they have, the gentleness. You stand there, world, and look on with the "Wow, those kids need a little discipline" glances when you don't know what your talking about. They are AMAZING parents with consistency, consequences and discipline. But this isn't something they can teach you how to do. Parent a child facing a terminal diagnosis all the while parenting her two siblings who don't understand...Her older brother who has his own set of diagnosis. Behavioral tendencies that create anxiety and fear. She is his sister. He would fight to the death to protect her, but DIPG is an unfair opponent. 

Her jammies smell of frankincense, her desserts are fruit smoothies. She takes vitamins like a grown up.  Cupboards full of essential oils and supplements she takes them all like a trooper. I pray to learn a lesson in this. Never judge. You truly don't know what path others are on. Walking down the aisle at Walmart or passing someone in the store...you don't know what they are going thru. I pray to remember that.

Its not what you think. While we may be struggling we are not defeated. Its not what you think. while we may be tired we are not depending on our own strength to deal with the next hour, the next minute. Its not what you think. Don't pity us. Compassion looks like a fierce commitment to hope. Don't feel sorry for her. She is God's child, filled with His strength and His blessing. DIPG might have invaded her brain stem but GOD fills her soul. Its not what you think world...We have hope in HIM. We are not alone. While we have moments of humanity and fear, We cling to HIM.

Heaven awaits us at the end of this journey. Regardless of its length, This life will eventually fold into a place that is not like we think...IT WILL BE SO MUCH BETTER.

Les Miserable

Les Miserable...A Story to Last a Lifetime

If you know me personally you know that my preference tends toward the melancholy. The artistic. Some might answer with "Really? I don't think so. You are usually the one with a ready smile and a bit of humor to lighten the mood." True. But if you really know me well you know that I prefer walks in the rain, and music in the minor key to sunshine and the satisfaction of major chords. When I sang opera in college my choices were always the tragic Italian arias over the lilting french melodies dripping with happiness. I would prefer to move people to tears of depth then make them laugh...I have always just been that way. 

So it is no surprise that my favorite musical of all time in the history of forever is Les Miserable. Set in the backdrop of 19th century France, Les Mis tells the tragic story of broken dreams, unrequited love, tragedy, and redemption. The layers of musical artistry and complexity weave the melodies into your soul until your heart beats along with the words "Do you hear the people sing, singing the songs of angry men, it is the music of a people who will not be slaves again!" And it swells with the sweeping, growing conviction of Javert as he sings "Stars." He is blinded by his devotion to his incomplete understanding of justice.

To say the messages and themes in this musical were complex yet relatable to the human spirit as a whole would be an understatement. I sit on the edge of my seat for the full 2 hour performance. I cry every time I see it. Though I know every line, could sing along word for word to every lyric, I still feel anticipation and appreciation for the way it moves me. Even after all these years.

I was first introduced to Les Miserable over 20 years ago. It later became a favorite of my best friend and I in college. Rather like a script of life's battles and lost love. We would sing those songs for hours and spend much time discussing our favorite characters. In true Stephanie style I have always preferred Fantine and Eponine to Cossette. Both of which die tragic deaths but represent all my melancholy soul holds dear. The character of Cossette, while one of the main characters, and who, in the end, finds true love and happiness amidst pain and regret, has never really appealed to me as much. Her rather chaste outlook, while adding a sense of innocence to the cynical and brutal world around her, lacks the depth of living through heartbreak the others possess. 

I went on to read the rather intimidatingly thick volume it is based on by Victor Hugo and proceeded to fall even more in love with the musical score. Each character and each moral theme seem to have their own lyrical line. The message of redemption and grace winning out over legalism and corruption run thru its entirety like a thick ribbon through a braid. 

I remember my college voice instructor telling me I should to go to Italy with him and sign Italian Opera. A dream of mine. Another professor said I should go to Boston and work on Broadway musicals. He laughed and said, "Of course you would always choose the Eponine's to the Cossette's though right?" How well he knew me...Another path, another lifetime ago. Its interesting to wonder what your life would be like if you had turned left instead of right...No real regret, just pondering.

Its fascinating actually. The week before we came to London I ran across a bunch of old writings of mine. Just musings, thoughts, wonderings really. Therapy in the written word. I found one that I had listed things I wanted to do, places to go, etc. Not so much a bucket list as a list of aspirations. Of things that meant a lot to me but seemed rather out of my reach. One was to adopt a child. Another was to see Les Miserable in London. Imagine my surprise when my sweet Mama gifted me with tickets. Two out of two. I am blessed to be a mommy and to have spent a unforgettable evening with Les Mis. and my best friend. 

This musical is a sprawling epic of altruism and idealism as well as greed and cruelty. It is raw emotions that bring it to life with a throbbing, heart-pounding energy that will bring goose-bumps to your skin and raise the hairs on the back of your neck.  I have found a deeper meaning that keeps drawing me back over the years. The eye-for-an-eye justice and legalism of Javert confronts the redemption and subsequent moral determination and compassion of Valjean. 

Valjean has every reason to hate and mistrust the world around him. But because of one act of compassion, he turns to God in wonderment and accepts the offer of grace. He spends the rest of his life attempting to care for the weak and outcast, prepared to sacrifice his own safety and happiness for others. Javert is the police inspector who devotes his life to hunting Valjean down for him to pay for his transgressions. "Honest, work just reward, thats the way to please the Lord," he says.  

In a world full of personal perspectives on justice, how to "win" salvation, works vs. grace, and other theological topics, this complex relationship, played out amid the interwoven lyrics and crescendos of Les Mis has always brought me back to basics. We are all sinners. We all deserve to be "imprisoned" for our transgressions yet we are offered grace with the hope we will accept it and be changed. Changed into people who can then be used by God. Transformed into people who let Gods love and attributes glow from them to be seen by others. 

Although every song is a favorite, three of them hold a special place in my heart. The first is "I Dreamed a Dream." I sang this song for my senior voice recital. It was one of only a few English language songs and the only one that was part of the Musical instead of the Operatic genera. Fantine (Cossette's mother) has reached the bottom of life's ladder and is reflecting on the dichotomy of what her life is like vs. what she dreamed it would be. It brings me to tears every time... 

The second song is "On My Own" sung by Eponine. She is the "friend" not the beloved. She is liked and appreciated by the man of her dreams but is not the one his heart loves. The way she described this difficult position with such a raw, articulate passion moves me every time.

Lastly is the a song I could sing in my sleep I know it so well. However, when I heard it tonight I wept. I heard it with different ears. A different heart. If spoke to me and for me in a new way. 

I was taken aback by how perfectly the anguished words spoke for my heart. Seeing as writing is one of my favorite things to do, I consider myself fairly adept at finding just the right turn of phrase that will express what I am trying to say. But there is a yearning, a pleading, a deep begging that has been at my core ever since Julianna has been diagnosed that I have been unable to capture in words. This song, these lyrics did. If you substitute the "he's" with "she's" and turn the idea just a bit you will hear my souls pleading to God.

Valjean is toward the end of his life. He is on the front lines of the revolution and his only goal is to bring Cossette happiness. The man she loves, Marius, has been injured in the battle and Valjean is desperate to bring him home alive to her. He sits by his side, exhausted, covered with the soil of battle. He is literally in the sewer of life. Trudging thru the worst of it looking for a way home. Sometimes carrying, half dragging, pulling him along, he pauses for moment to catch his breathe and looks heavenward. The song is the most gentle, raw, heart-wrenching prayer. Begging, pleading. laying it all out on the table before God, asking for a miracle. 

These are the yearnings of my heart for Julianna. The "Home" in the song is life as it could be with her well again. Please Lord, Bring her home...

God on high

Hear my prayer

In my need

You have always been there

She is young

She's afraid

Let her rest

Heaven blessed.

Bring her home

Bring her home

Bring her home.

She's like the son I might have known

If God had granted me a girl.

The summers die

One by one

How soon they fly

On and on

And I am old

And will be gone.

Bring her peace

Bring her joy

She is young

She is only a little girl

You can take

You can give

Let her be

Let her live

If I die, let me die

Let her live

Bring her home

Bring her home

Bring her home.