That Moment...and This One...

That Moment...and This One

   

     The chill in the air brings with it a deeper chill in my bones. The crisp air hitting my face takes me back. The first morning this year we had snow flakes drifting I wanted to be sick. The ice on my windshield left me with the feeling of impending doom. Not a usual reaction I know. It wasn't so much the actual snow flakes, ice or temperature per say, rather it was that all those things take me back to the last time I felt and saw them. Last November. Last December. When our lives ended. The frosty weather reminds my soul of the chill four letters brought to our lives. DIPG. Ice piercing tranquil reality. Innocence buried by frozen fear. 

      I have always enjoyed the changing of the seasons. When the hellish heat of summer gave way to the quickening of Fall and then the moodiness of winter. Never again will Fall give way to Winter without my heart being squeezed. Never again will the sight of rain pounding on a window or snow drifting in a back yard bring anything but a deep terrible deja vu. 

      One year ago tonight we knew a line had been drawn. The moment that video with her terrified eyes trying to turn back and forth came across my phone and we rushed over to see her little face...Life as we knew it was over. The day had been filled with Sabbath and warm, golden puppies. The evening filled with concern and an ER visit. The night filled with hours of dark driving, the 1st IV pokes, scans, and the four letters. 

      One year ago it rained all day. Tears from the clouds formed streams down the windows, our cheeks, and in our hearts. Forming large puddles beneath our tires, and soaking our spirits. Dark clouds had moved into our skies. We have yet to see the sun...

I wrote these words then...the memory of them is thick in my mind today...







November 2016-
"Surely this is a dream right? The rain drops pounding on the windows outside the hallway of the pediatric oncology unit were not real. The little red wagons being pulled around the nurses station, filled with little ones are an illusion right? IV lines disappearing under little shirts, pumps being pulled behind by hollow eyed parents with smiles of desperation. They all look the same. Why is my Julianna in one of them? How can those be her little braids disappearing down the hallway in the wagon pulled by her Daddy? 

We will wake up tomorrow and she will come bouncing in all smiles and curls and sparkle. Petite and agile, a little dynamo. 

But it wasn't a dream. The pain of it would surely have woken us up by now. No one could stay in a dream and still have this much pain.

Well if it wasn't a dream then it is a giant mistake. Yes, that is it. It's an error. They have the wrong child. They haven't done their safety checks (thinking as the ICU nurse I am) and made sure they have the right patient, right chart, etc. Seriously people, you should check your stuff before you scare people to death....

But they did and we are.

I remember vividly the moment we heard the words it seems all DIPG families hear. The oncologist was standing in the room. She had come in all chipper and smiling. I had not seen the MRI scan myself yet and asked her to show it to me. I might be an ICU nurse, but it didn't take one to see the large, glaring glow of foreign tissue in the middle of my Julianna's brainstem.

I found my eyes kept looking down to the lower lefthand corner of the MRI. Where her name was. I kept checking to make sure I had read it right. That it was still there. That I was still there.

As my eyes kept returning to her name. The name we as a family had talked so much about before she was born, the oncologist just sort of droned on and on. I am sure she was saying words that mattered, and they probably even made sense. But, honestly all I could think of was "I wish you would just be quiet. Stop talking. Go away."

I know that it is probably horrible for me to admit it. I am kind of ashamed to but it is the truth. These thoughts I had. I share them only to give insight into the moments that shape us. So that others who have walked through moments such as these don't feel alone if they have thought similar things.

It's uncanny how the words were heard on that diagnosis day have been heard, almost word for word by other families with the same diagnosis. "Go home and make memories." "Well, its inoperable, and we don't have any real treatments so....you should probably just...make the most of the time you have left."

As these words floated from the lips of the oncologist into our ears...I remember strange things. The way her tweed pants were creased down the front. The way her smile stayed intact as those impossible words roll off of her lips. Why is she smiling? Stop smiling, this isn't a time to smile. I wanted to wipe it off her face...literally. The way her hair curled up around her ears. Why did she bother to curl her hair? Who curls your hair when you have to tell a family their little girl is going to die? She should be wearing sackcloth and ashes for crying out loud....The way Julianna looked so ok. On the bed, her mommy arms around her. How can she have a time bomb in her little head? This is ridiculous. I am picking her up and walking out the door. Enough of this dying rubbish.

I remember the way the pattern on the floor was symmetrical. How could it be so even when everything just fell apart? The world is off kilter and the floor is still in nice even patterns. I don't blame the oncologist personally and I should feel badly for picking apart her appearance but it was what my mind did. I will never forget those details."

       The days of her ensuing bravery and courage would number two short of nine months but will linger forever in the hearts of many. That fateful day led to more like it. Standing in the hallway right outside the Pediatric Oncology unit. The cold of the window as I pressed my face against the pane. Willing the cold of the torrential rain to wipe this day clean. I feel it now...How the chaplain came and stood a few feet away and asked if she could do anything. "Yes, please. Make this a dream. Wake us up. Pray to God for I have lost my voice and all that is coming out is a guttural cry of pain."

      The rain would later give way to frost, then snow. More snow then we have had in years. Moving the family to a home away from home. The miracle of finding a place that would take puppies. She had to have her puppies. What an angel.

       If I close my eyes I am standing in that living room, looking out the large picture window. The yard is thick with knee high drifts of sparkling snow. Beyond are the soft waves of the snow covered golf course. The tree branches icy and dancing in the snowy breeze. Winter wonderland. 

      The juxtaposition of this beauty against the impending threat of death brought with it a puzzling irony. The purity of white, the dazzle of frost, the innocence of children making snow angels. The early morning tears, the bravery of a Mommy and Daddy doing the only thing they knew to do to try and save their little girl...It pierces me. Haunts me. It will forever be what I see when winter comes. The beauty she saw in the snow, and the terror of what spring might bring.

     She loved it though. Her knee length purple coat, zipped up tight with her purple boats and hood. Soft, brown fur framed her face and her hands held onto Sophie's service dog vest. Yes, she was unsteady but she was a "Going girl, not a sitting girl." Words that she would say many times in the months to come. And she would live them. She would go, from home to Spokane, to Seattle, to London, to Monterrey, Mexico...

     
     As we face the holidays I am filled with many things. I miss her more then I could ever hope to capture in mortal words. Every little tiny nuance of her...I miss. I am filled with a yearning, an ache, a deep twisting, burning, pulling. It fills my stomach and grows up to grip my throat and squeeze my lungs. One more breathe. One more...then another. For her. To live in her honor. To do what she would want to be doing. She loved her family and her Jesus more then anything else. 

     I guess we will always have these triggers. That take us back as quickly and as vividly as if we were there today. Deja vu is not strong enough of a word to capture the transportation through time. Even though the pain is worse there, I ache to go back. Because she is there. Braids, pink and teal fingernails. Unmarred and innocent...I want to sneak one more snuggle. I want to kiss her one more time. I want to...be with her.

     I love you baby girl. Sissy loves you. I know that your strong handsome angel was with you even then. I know that Jesus has you and I know that the SON will shine thru the rain an darkness we are held in and make this all right again. His light will pierce thru the dark clouds and He will bring you to your family. Reunion. Oh how glorious it will be to hear your squeal of joy! To see you hug your Mommy, your Jeje, your Bubba, Nanie, Samo and your sweet Daddy...An enteral hug that can never be broken. We wait for that day baby girl. We take one more breathe. And then another. Reunion. In this moment it is what we live for...

Darkness meets the Chain-Breaker

Caves

Darkness. Thick enough to touch. Smelling of sadness and pain the darkness actually has an aroma of its own. Sometimes we feel it touching our skin like a dampness we can't wipe off. This darkness is palpable. I taste it and feel. The day the four letter word came into our lives was the day the sun turned out. November 20, 2016. DIPG. The sun as we knew it was gone and the darkness began to descend. Almost nine months later the darkness smothered us as she took her last breathe, August 18, 2017. Secure around us like shackles. Chains of death tying us to the darkness.

I have never really liked darkness. In fact I absolutely do not like it. I am the one who takes three flashlights and a head lamp just to take the trash out at night. Who runs back to the house from the not-so-far-away barn because the darkness must be hiding a boogie man ready to devour me.

This is probably why I don't like caves. Although the shelter and protection against an unexpected mountain storm is appealing it comes at the cost of the darkness. When you can't see the back of the cave its even worse. Where does it end? Who is lurking back there ready to pounce when I turn my back? Even if reality only holds spiders and cobwebs my imagination is sure its a grizzly bear.

The space in our lives left by her death is too big to explain. There is no end. Like a cave we will forever be tipping toeing thru eyes searching for the light at the end...Looking for u baby girl...Turning my head when blonde curls run by and then quickly remembering reality. Every morning, those first moments as consciousness peels back the layers of sleep....you are here. Then reality hits again. A knife in the stomach.

When a family loses a child the cave is long. The stolen years, the darkness never changes, the path still as rocky and treacherous years later. We are blessed to have friends in our life that have used their own experiences in caves and grief to walk beside us. Entering our Caves of grief while still in their own, taking our hands and reaching out to the cave wall, they show us how to take another step, then another. How to feel along the wall with our fingers and how to strain our eyes for the longed for light. The darkness still presses in, it will never change. But the blessing of a friend who has walked longer in her cave is life saving.

I miss the light. I miss the feel of the fresh breeze against our skin. I miss being able to look over the horizon. I miss you baby girl. The world is moving on. Some look with pity as they pass, some stop and ask how we are, some say nothing, enter the cave and walk beside us. We are thankful for all who in their own capacity are trying to be here.

I will be honest, there are days I forget the promise. The darkness is thick and I get caught up in the what if's and should have been's. It is in those moments I am thankful for friends and family who remind me of the promise. That the cave has an end. That the years of walking thru the darkness, feeling along the rugged walls, and tripping and falling onto our knees, will end. That One has walked thru this cave before and blasted out an end. An opening into the light. Where the light chases all the dampness away and the sweet smell of hope and reunion will surround us.

So we take another step, we fall, we crawl, tears at times blinding us, we try to raise our chins and keep our eyes straining for a glimpse of the light at the end. There are rare moments when our nostrils catch the barest whiff of the sweet smell of hope. It draws us onward...

One of the misconceptions is that our eyes will grow accustomed to the darkness. One would think that when darkness descends the eyes would adjust. Pupils dilate to admit as much light as possible and the mind would grow used to the dimness. This is not the case with this darkness. Losing a child is a darkness you will never grow accustomed to. Mommy's and Daddy's will forever feel the hole as acutely as the day it happened. Families will always notice the empty chair.

Our eyes strain to see the first glimpse of light. Our fingers searching for a change in the terrain to indicate the cave is ending. The light is real. It is there. Soon and very soon we will make a turn and the light will be there. Fingers of brilliance and warmth reaching thru the heavy darkness and illuminating our souls. An end to this path. Fresh air and warmth will touch our souls and our family will once again be whole. Reunion. Her strong and handsome angel will hand her to her mommy and daddy again. Blonde curls will be hers. Giggles and hugs and fluttering feet dancing like our butterfly used to.

So in those moments that we have forgotten what the lights look like, we take another step. Knowing that there will be light. No more boogie men waiting ahead of us. No more night. We hold onto this hope. He has broken the chains of death. He has conquered the grave and it holds no power over Him or anyone who believes in Him. She did. Jesus has her. She sleeps in Him without fear or pain.

Another day of the darkness breaks but we crawl forward, holding the promise of the soon coming light close to our hearts. Come soon Jesus. Stand with us in this darkness and help our eyes to always look for You, our Chain-breaker...

https://www.facebook.com/Gaithermusic/videos/10155420356401187/

Shave FOR the Brave- My Promise

Shave FOR the Brave

It was November 21st, 2016. I was kneeling on the tile floor of a hospital bathroom. Jeans damp with the spray floating out of the open walk-in shower before me. It was the day after. The day after we heard the four letters that switched the direction of our lives. DIPG.

It didn't seem real. She looked healthy and really no different then she had two days before. She had been confined to the bed up until now and had chosen her Sis to help her into the newly approved shower. Even the shower door was too much separation so we left it open and I knelt, half into the spray. We talked about a lot of things in that shower. Moments I will always hold close to my heart.

We had no idea. How could we? Even now we don't know what the future holds. We had been told that she had a tumor inside her perfect head. It didn't seem possible. Perfect blonde curls were a halo around her shoulders. It would be months before we really got a full glimpse of the monster inside her head.

In those moments, in the shower, we talked about a lot of things. Her voice wavered as she asked me, "Sissy, will I loose all my hair...?" The look in her innocent eyes tore me down to my soul. Even in those early hours of this journey I wanted to jump in front of this train. I wanted to stop it. Protect her. Stop it from touching her. The bruises on her little hands from IV starts were so far the only physical marks to be seen. Not too bad. Lets go ahead and go home now. Little did we know that almost every inch of her little body would be touched by this disease.

"Sissy, will I loose my hair?" At that moment I didn't know. We had been told to go home and make memories. Would there be treatment opportunities that would take away her golden curls? No one knew. Those curls her Mommy so lovingly braids and twists and ponytails. Her creativity amazes me.

I reached out and ran my fingers through her dripping curls. Without a moments hesitation I whispered, "Baby girl, I don't know exactly what is going to happen but I can promise you this. If you loose your hair I will loose mine too. If you loose your hair I will shave mine too. All gone. You won't be alone. You won't feel different cause no one else in the family has no hair. I promise baby girl. I promise." "Oh Sissy!" Wet little arms around my neck. Wet little person in my lap. Holding her close and praying that life wouldn't hurt her.

As the journey took another day and then another and another radiation took some of her hair but she was able to rearrange and didn't feel the difference too much. A few weeks ago, this bump resulted in the need for brain surgery to relive the pressure inside her perfect head. As she wheeled back into the room we could see that this monster had yet again claimed part of her. Her little head was missing almost all of her golden hair.

It was never a question if I would follow suit. Of course I would. I promised her. Today I made good on that promise. Without any reservations. It's just hair. I have a choice in this loss. She didn't. The other little warriors fighting for their lives don't have a choice. My hair will grow back. Some of the little ones won't have that chance...

I have been asked by some who knew I was going to do it, "Why Brave the Shave? What difference will that make?" Well, besides my shower-side promise, Braving the Shave is an amazing way to raise awareness for these little warriors. When someone asks what happened to your hair, you have the opportunity to share your heroes story.

For me it is not so much Brave the Shave as Shave FOR the BRAVE. She is the bravest, kindness, most courageous human I have ever known. Though she didn't choose any of this, she walks with her Big handsome angel and her Kind Jesus every step of the way. Though every inch of her little body is touched by this bump, her innocent heart is true and precious.

I will walk with my head held high. Proud of my baldness. Proud of be like my hero. She will not be alone in this fight. Its not about the hair at all. Its about Julianna. Its about the journey. There is a strange clarity to be without hair. To look at your face in the mirror and know that these little heroes see their own faces in the mirror and wonder what they think. Will it grow back? Will I get to grow up?

I was blessed today to have my amazing Mom, son, and Jillian there to support me as I made good on my promise. I wished I could have been with Julianna today. To see her little face as we looked at our bald heads side by side. But it wasn't to be. Together in spirit. Together in our hearts. She is my person. She is my heart. The little girl I never had and always wanted.


My dearest friend Jenee agreed to do the deed. How cool is that? She was AMAZING! I was able to donate my hair to make wigs for kids with cancer which made it even cooler! Thankful to LeFore's Spa and Salon for hosting an amazing fundraiser today and for helping me Shave for Our Brave girl! Jenee did the most amazing job. It was special to share that moment with her. She has been such a rock in our daily journey.

The kids got in on it and my dear dear sweet friend the most talented Melissa McFadden came to capture the moment so we could share it with Julianna. She has been such an important person in my families life. She has been here to capture so many of the moments, the ones that matter. I cannot thank her enough for her wiliness to step in and make those memories last forever. She gives of her time and talent and I can't ever say thank you enough.

I will stand and walk with my girl every moment of every day. You don't need to be physically with someone to be with them. Our hearts are together. I am proud to be her Sis. I have never ever been more proud. More humbled. More honored to stand with her...That moment in the shower was a long time ago. Another lifetime really. The Before. Yet it was just a moment ago. I can still see her little eyes asking me that question. Baby girl, no you will never be alone. We stand with you. We fight with you. I wish it were me. I wish I was the one with DIPG. That she was still untouched. I would do it without hesitation. However, since that can't be done, I will stay as close as I can so she won't feel alone. Its not about me. I stand as a reflection of my love and pride in her spirit and faith. I love you baby girl. Sis is here....

If anyone else wants to Shave for the Brave we are going to try to raise funds to continue Julianna's treatments. She is making such progress and we are so thankful for all the love and support.

You can set a goal and get sponsors or donations to make that goal then you can Brave the Shave yourself! Or you can challenge someone else to Brave the Shave and be part of their team! No matter what Julianna would love to see pics and videos of you Braving the Shave!

Some people are going to do an Undercut and just cut off a little on the back of their hair like kids who have hair loss from radiation. Others are going for the whole thing like kids who lose their hair to chemo or surgery like Julianna.

No matter what we are showing our support for our girl and helping raise awareness of these little warriors. Thank you all for being part of Team Julianna. We Love You!

The Waiting Room

The Waiting Room

7-18-17

Waiting rooms. They look the same in every country. Regardless of the language drifting around you the room is the same. 

Walls stand as witnesses to the countless hearts pounding. Waiting for news. Waiting to read the faces of the staff as they come out the  doors. Are they smiling? Or they worried? What does it mean? Waiting for the ones who know to come in and give us answers we so desperately seek. Too often they have none....

We don't wait patiently. Sometimes we sit and think " Hurry up! What could be taking so long? Don't you know we are dying with worry out here?" Sometimes my mind even doubts those behind the door. Do they really know what they are doing? What if they never come out?

Chairs hold bodies in expectation. Some hunched over in resignation. Others with tapping feet and drumming fingers. Anxiety leaking out of all extremities. 

Chairs can't hold all. Some pace and stand and shift back and forth. Worry and fear manifested in motion. The carpet shows signs of wear on the preferred pathways of pacing 

The table holds a worn bible and a rosary. How many times have worried hands leafed thru those thin pages seeking hope. Comfort. Guidance? How many times have those smooth beads been pressed between fearful palms?

All waiting rooms are the same really. Expectant faces. Waiting for the words that everything is ok. Better. 

The stories waiting here. Each person holds a person in their heart. A story in their mind. Each one is the only one for each one. So much pain. Walking in their own shoes no one knows the reality of another yet we all share a commonality. Wishing we weren't here. Wishing they weren't here. Wishing for the "before". 

Beside me sits an elderly Hispanic man. Hair seasoned with grey, face lined. He has a distinguished hard working air about him. Clean trimmed fingernails end calloused fingers drumming on the knees of well worn jeans. Head bowed, brown eyes filled with worry. He lifts his eyes expectantly every time the door opens. He is worried. He is.... all of us. Our eyes meet. We do not share the same language yet our hearts connect in understanding. He nods. I smile. We wait. 

I am reminded as I sit here in this room of waiting that our lives are really spent in a similar  " room". This earth is our waiting room. Filled with anxiety, fear, hoping, worrying. Waiting for those doors to open and those who know who can change things to come thru and tell us everything is going to be ok. 

Our lives here on earth are a preamble. An existence without all the information.  The other side holds answers. Plans. Understanding. We wait here in the room or torture and our minds conjure up all kinds of imagery. Ask all kinds of questions. Fear all kinds of monsters. 

It is not until the doors to this earthy waiting room burst open and the King strides threw arms open certainty and hope on his face. We wait to see that face. The ones who brings the answers to our questions. Why? Why her? Why this? Why didn't You? 

His face holds the peace we yearn to see. That everything is going to be ok and we can take that deep breathe and our hearts can beat again. We know that with that entrance we can leave this waiting room and go to the real place. Where we no longer wait for the other shoe to fall. 

And so we wait here. In this earthly room of waiting. Until the doors open and heaven is our reality. Please Come soon Jesus. 

#foreverhersis

She smelled of Doritos and a hint of frankincense. As I held her close and whispered how much I love her... Golden hair in what used to be bouncing ponytail beneath a Team Julianna hat. Pink shirt with Gold sparkling heart we bought her and her fan around her neck.

She shouldn't be driving away. She shouldn't be headed to yet another foreign country to fight for her life. It is dark and cold and early. There is nothing her Mommy and Daddy want to do more then scoop her up and tuck her in bed safe. This world is not safe. Not for her. Not for anyone.

Cancer changes every tiny part of your life.

Her breathe is warm against my cheek. I feel her strong pulse against my chest as I hug her tightly. She is brave when she doesn't feel like it. When she doesn't want to be. I wish I could do this for her....

Her giggle whispers in my ear when I tell her the healthy snacks Nana brought. She is worried about her wheelchair that is being shipped. We joke about how Daddy said it will probably pass them in the air as it is to be shipped here today. I promise that we will do whatever we can to get it to her asap. She says "Really Sissy?" I say "absolutely!" Inside I am thinking "Baby girl I will fly to the moon and back if you need me to."

I love her. She is my special girl. Our hearts seek to care for others even when we are struggling. She is an angel.

More hugs. Hurried. Desperate. Faining assurance I wave and smile! More I love you's. Promises to call and text and and and.... my hand reaches for my fence to keep me upright as I close the van door. The van holding my whole world backs up gravel crunching. Hands waving. Kisses tossed. I love you's ringing. I smile and give a thumbs up. You got this baby girl!

Glad she can't see my tears. Glad she only sees my smile.

Darkness descends quickly as the vans lights bump down the road. "Jesus go with them..."

She smells of Doritos and a hint of frankincense. I will hold that hug in my heart until I can hold her again in my arms.

#foreverhersis

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)