That Moment...and This One
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...
