Contrast

Contrast

The lights on my screen flicker as my Mac comes to life. Keyboard sits beneath my fingers ready to receive whatever message that flows from my thoughts. Its early. Very early actually or perhaps considered late depending on when one goes to bed. The bright screen flashes up and illuminates the middle-of-the-night darkness of my bedroom. I sit propped up in bed, computer on my lap, thoughts a jumble. I seek clarity therefore I write. I seek understanding therefore I write. I seek....Hope therefore I write.

As my eyes adjust to the sudden brightness they are met with Julianna's face. On my screens background, she is sitting on a beach. The scene is a cloudy day, looks cold even as she has a fuzzy, sand-covered sweatshirt on. But the cloudy day doesn't seem to affect her. Jeans over long, thin legs covered in sad. Blonde curls escaping the carefully done made-with-love braid her mommy did that morning. Framing her perfect, slender face. Dimples, like matching quotation marks, on either side of her wide even smile. Sand is dusted generously over...well, ALL over her. Her expression and body language exude, "Life is good, I am content, I am confident. I am safe." The photo captures how she just plopped down on the sand after running and dancing through the waves, unaffected by worry or care.

After this photo was snapped I am quite sure she bounced up and dashed off in pursuit of further adventure. She could give her very athletic 12 year old brother a run for his money yet somehow still manage to instill self confidence into him regarding his own abilities. Her athleticism came naturally and was therefore effortless. We have wondered more then once how her combination of athleticism and grace would play out as she grew up. We have joked around that she will give those boys a run for their money. Charismatic and kind. Always the center of the friend group, everyone wants to be Julianna's friend. Because, well....she makes you feel good about yourself. She can climb a tree or sit demurely. Beautiful in the way that matters.

It is the absolute perfect picture to describe Julianna. Petite, mischievous, energy paused for a requested photo but about to spring to life again. Not letting the grey clouds or cold wind dampen her spirits. Every sandy inch of this photograph speaks to her innocence. Her hope and expectation of her next adventure. Who knew it would be inoperable brain cancer...

I logged on this early morning with thoughts of a different post. It wasn't my plan to write about this...but then her face popped up and  thoughts washed over me, gripped me, seized my heart so hard my chest hurts. "I almost don't recognize her any more" I thought. Sure, her blue eyes and gentle heart are firm as always. But that is about all that remains the same.

Looking back on the days immediately following her diagnosis, I remember being in denial. Looking at her sitting in that bed, confined by IV tubing and bed rails, she was still ready to bounce out of there. We had to slow her down to go to the bathroom so she wouldn't pull anything out. She didn't look sick at all. With the exception of her right eye turning slightly inward there were no outward signs of the monster dwelling in her life center. I remember thinking, "Ya, so they totally can't be right. Look at her! She is perfect. There is absolutely no conceivable way that this little girl, blonde braids falling over her mommy shoulder, can have a deadly tumor growing in her sweet brain. Nope."

It was inconceivable then the ways this disease and treatments would change her. Not just outwardly. one can't fight for one's eight year old life without some inner battle scars. Denial ran deep...or rather shock. Our Julianna is the glue. The sunshine. The voice of rational thought between two more emotionally based siblings. How could she be the one facing the battle?

Being an ICU nurse for the past ten years, I have talked about, educated to, walked with, and understood the phases of devastation and grief following a diagnosis like this. I have had the "Quality vs. Quantity" of life discussion with wives, husbands, parents and children regarding their loved ones in the ICU bed. The rational, simplified words flow easily from my mouth. While I pray that my explanations helped in some small way to those I talked to, they mean nothing to me now. The face in the bed is our Julianna's face. Changed by this disease yet her all the same. Brave. Stubborn. Perfect.

Contrasts. Black and white. Before and after. Then and now. No shadows of easing into a new reality. No grayness. Its ironic actually. The phrase "Go Grey for brain cancer" is a slogan to raise awareness of brain tumors. Grey ribbons, grey banners, etc. There is nothing grey about this disease. DIPG is full on black. We didn't get the privilege of sliding into the new picture, easing the transition from white to black with the softening hues of grey. No. Bam. You no longer live in the sandy innocence. You live here. Where little girls can't get out of bed in the morning because they don't feel good. Where its hard to take a bite of your quesadilla and when it is in your mouth its hard to chew because one side of you isn't working as well as it used to. No grey in DIPG.

For the past few days I have been filled with memories of those days after diagnosis. Maybe its because of the contrast I see between the beach picture and the now picture. Maybe its because I miss that little bouncing sweetie pie. I don't know. I think it is mostly because, every day we continue to lose little ones to this disease. Every day we gain more. This community of DIPG children and families somehow remains constant as every day some lose the fight and more join it.

We live in a world where someone living on the other side of the planet feels like down the street. Connected by technology we are not spared the awareness of troubles and trials around the globe. A curse and a blessing, knowing about others pain. The support and resources gained are priceless. There are people out there who have dedicated their lives to these children and their families. Firmly standing in the middle of the trenches, mud, blood, tears all around them, they selflessly share in it all. Knowing full well the statistical outcome, still they pray, they rejoice, the cry, they work towards hope. We were introduced to some of these amazing people mere hours and days after diagnosis. They remain by our sides still. Firmly supportive and forever available.

Yesterday was Easter Sunday. I struggled. It was really quite a wonderful day spent together. We were so graciously hosted by dear friends who somehow made the day almost normal. Hunting eggs with other children, so kindly filled with sugar free candy, she lit up when she saw one of "her eggs" hidden. Her stumbling steps could barely traverse the yard yet it didn't keep her from walking all the way to the barn. Her left hand couldn't grip an egg, or her basket but that didn't keep her from holding fiercely to it with her right. "Here Sis, you hold this left hand cause its not cooperating and your strong enough to catch me if I fall." Oh baby girl. If only I was strong enough to catch you as this disease tries to pull you down. She chuckled at the funny places Jenee had hidden the eggs. I breathed in the sound of it. Holding my breathe as long as I could in order to capture the memory.

Would this be the last Easter together? Dare I even think it? Is it a lack of faith to have that question quietly lurking in my minds doorway? Contrast. Reality vs. possibility. Faith vs. despair. If you had told me that we would so thoroughly be changed by this journey, so completely and utterly reshaped, I would have doubted you. Today, our little lady couldn't even sit down on the sand let alone bounce up from it.

As her Sis, I am filled with questions. What does Hope look like? What does today mean? Each second ticks by and the world seems to carelessly squander them. Even when you try to grasp them, hold them, keep them...they somehow manage to trickle through your fingers and slip away.

I don't know how to do this. DIPG. Sometimes the fear of the future grips me like a vise and I can't breathe. Literally. Standing where we are standing every moment is not guaranteed. Every morning could bring new symptoms. How do you live like that? The answer is...you just do.

The juggling act of being a family member of a child with cancer is completely not talked about enough. I am not her parent. However I have viewed some of the complexities. While not an expert, I can't even pretend to have known the anguish of watching your very own child fight, I love two people who are. My sweet, strong, sister and brother in law. They are warriors because they have to be. The moment we heard "Julianna has brain cancer" their lives changed trajectories. Once going left, now going right. No going back.

Somehow in the semi darkness of the morning they have to pull on the armor of God as they climb out of bed to meet the day and whatever it holds. Two other children need them too. Life keeps marching, bills to be paid, fences to be built, jobs with responsibilities beckon. I watch as the journeys of too many others unfold. Some families have 4 or 5 other children. Some just had a new baby. The joy of new birth mixed with the reality of possible death. How do you  make memories to last?

I read a post by one of the other DIPG warriors fathers yesterday. Poignant and thoughtful he expressed himself so well. The contrasts. Hope or despair. Bucket list or the agony of more treatments.  It got me thinking about the contrasts and how families cope with them. "Before she could play soccer and dance...now she can't walk across the room without help." "Before we thought we were appreciating every day...now we know we are." Dimples no longer visible, smile lopsided, she is none-the-less her. Perfectly sweet and beautiful. Yet, to be completely honest there are times I don't recognize her from her old pictures. I can't even believe I am writing that. When a new reality hits so hard it can almost obligate the old. Her physical limitations are not to be pitied. She is herself. She is Julianna, our angel.

I guess the bottom line is this. I am struggling. We all are. There is nothing that can be done to comfort or ease it. Except for divinely given courage and peace. I will admit it feels far away sometimes. There is no value in my pretending that I feel it all the time. I believe God gives us words to share the truth. I have no brilliant wisdom or insights. There is no drawer full of answers or a list of people who can fix it.

I feel myself feeling angry sometimes. Little flashes of it. Watching other parents sit on their phones while their child tugs at their sleeves, "Mommy, mommy, play with me." Watching groups of little girls giggling, and teasing. Watching families untouched and whole. They plan for their future. They ask their kids what they want to be when they grow up and it is likely to actually happen. Parents gripe about being tired, or overwhelmed and wishing they had a break from their kids.

I want to shake people. At least you get to watch your child grow up to be whatever they will. At least you have kids to be tired from. At least you are overwhelmed because they are there, busy, healthy, active, alive...

I know its wrong to feel that...maybe part of the DIPG path we walk on. I read other Aunties and families share similar feelings. We would not wish this diagnosis on ANYONE, EVER. But thoughts of "I wish we were still there" or " If you only knew how hard it is to watch you live your life while mine is crumbling" still raise up in my mind. Parents and families who have lost children understand. Its a selfish kind of feeling yet completely explainable. We are robbed of the dreams of the future. The old future where we see her playing soccer with the boys and going to college, getting married and becoming a mommy...hangs tenuously by a thread.

Contrasts.

I write these dirt-honest words in hopes someone else who is traveling a similar road will read them and know they are not alone. They are not strange or faith-less for feeling this way. Its OK. Gods got you covered when when you feel like your out in the harsh elements. His hand holds you even when you look down and see only rock bottom. I know this because I have history with Him. That is really the only way you can ever be sure of someone right? I mean, people can talk a good talk but it really boils down at the end of the day to behaviors. Have they had your back in the past? Did they do what they said they were going to do before? They can write beautiful letters and say eloquent words but what do their actions say. That is what you can hold onto.

Even though there have been times of darkness, He has always stood beside me. His actions say He can be trusted. His words have been proven true. He is a good God who has us in His heart. That is the only reason I take the next breathe, and the next one after that. I have a history with Him. I need to remember that.

(I had to take a break at this point when I was writing this post this morning. Got up and was driving to work, thoughts swirling, I turned the radio on. The lyrics that flowed from my speakers filled up my heart.)

If you’ve got pain

He’s a pain taker

If you feel lost

He’s a way maker

If you need freedom or saving

He’s a prison-shaking Savior

If you’ve got chains

He’s a chain breaker

It was as if He was speaking directly to me. DIPG brings a lot of pain. Physical, experimental treatments, needles, headaches, and the emotional pain of childhood loss.

If you’ve got pain

He’s a pain taker

DIPG blurs your vision. the map you had of your life has been torn out of your hands, ripped up, shredded, stomped on and then burned. you are told my medical professionals that they have nothing to offer and you are left to spend countless hours searching and networking...just looking for a way through.

If you feel lost

He’s a way maker.

The suffocation of this diagnosis can steal your breathe. Steal the life of hope you have had. It can imprison you in walls of fear, anger, worry and despair. the steel bars of future loss cover the windows to hope.

If you need freedom or saving

He’s a prison-shaking Savior

DIPG has a lot of chains. The chains of fear, worry, hopelessness, fatigue, death. They silently wrap themselves around you until one day you look down and you can barely move.

If you’ve got chains

He’s a chain breaker

I have a history with HIM. He has had my back before. He has it still. Despite the anger, fear, feelings of being suffocated by possible future loss...He has me, us, her...I felt like that song was played just for me. at that moment. a audible reminder that "Hey, I am here. I love you."

The next song began and at the opening chord i felt tears running down my face. It was my song. "I Am Not Alone" by Kari Jobe. That song speaks to me on this journey. Every word fills me with a sense of peace.

And so I am grateful. To a God who takes the time to play some songs at just the right moment to remind me we are not alone. For Him always having my back. For the ability to speak honestly and know God is not surprised by my doubt or threatened by my fears. He simply IS. and He will continue to BE with us through whatever tomorrow holds...

(The amazing Alana)

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.