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...

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