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.