The Dark Side...Waiting For the Light

The Dark Side...Waiting For the Light

Facebook has always been a quandary to me. An odd place where life is filtered, pictures that represent only a moment in time are posted as representative of reality. "The Facebook Life" is a real phenomen that drives some mothers to tears as they compare their real life exhaustion to the photo-shopped image with their counterparts. Feeling like a failure because they don't measure up to the non-reality.

Well, over these past few months I have found much good about this venue. It is an incredible method of disiminating information, rallying the troops and connecting with individuals who can support you in your time of need. I am thankful for Facebook. And for each and every person who has clicked on Julianna's website, donated, and most of all prayed. 

However, as I become more intertwined in this community of DIPG warriors, families, advocates, and read each of their stories, I am overwhelmed. There are too many. Too many little faces in the innocence of childhood. Too many Mommies and Daddies, Aunties and Nana's desperate for help. 

Its odd actually. At first I felt no part of this community. I mean 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 would 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 here. 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 pants were creased down the front. The way her smile stayed intact as those impossible words roll out 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. 

Two months later, as I sit here, I realize that I have come to another reality. The shock has not worn off. The wish for different news is still there. But we have spent time educating ourselves. We have become acquainted with other families who are living this same reality. Facebook is a wonder. A resource of information, encouragement, and support. 

I am thankful for each of these amazing people who have banded around us and offered information, contacts with others who are walking down similar roads, and support. 

I thought DIPG was rare. They told us it was rare. It isn't rare enough. There is a wonderful Facebook page dedicated to the support and awareness for families fighting DIPG. Almost every day they share stories, ask for prayers, send out encouragement and advocate for these precious children. Almost every day there is a new face, a new family has heard those words, a new child warrior is facing this DIPG monster.

Every day these amazing advocates send out the faces, the stories, hopes, and needs of each of these little warriors. Collages of their precious smiles, all fighting for their lives. Each smile is a story. So easy too scroll past. Its not MY child right? I couldn't happen to me. 

I have likened this journey to sitting down and watching TV. Your show goes to commercial and a commercial for St. Judes comes on. Tender music, valiantly fighting little people with no hair and a lot of courage. The pleas for help, funding, and support come from the mouths of mommys and daddys.  While your heart may be moved by these stories, you feel only a twinge of guilt when you change the channel to something less uncomfortable.

We can't change the channel. That child in the bed, walking down the hall with the IV pole is OUR Julianna. We can't seek another view when it gets too uncomfortable or heartbreaking. I am not shaming those who do "turn the channel" both literally and metaphorically. Not at all. I am simply trying to explain something that I can't explain. 

Today it happened. I was scrolling through Facebook and came across a collage of DIPG warriors. There she was. There was her face. My little Julianna. My first reaction was "What? Why is SHE in this collage? I don't understand? Thats not right. She doesn't belong there. There has been a mistake somehow I will have to get in touch with them and make sure they fix that." But it is real. It made it more real somehow, seeing her face there.

I don't want it to be real, but it is. I want to fight, to hide, to run, to scream. To, as a dear friend of mine so elegantly captured my heart " Scoop her up and run to the mountains where she can be wild and free."

But that will do no good. All I can do is fall on my knees. While not literally moving, falling to my knees is the only way to make progress. To find help. To keep breathing. It is the hope we have.

As I sit here and think about it, her face, there, I am thankful for the creators of those collages to do that. To speak her truth. To let others see her amazing spirit, her smile, her heart. While I would do anything to take it away, it is real and I am thankful that her story is being told. It matters. SHE matters. She is not just a number or a diagnosis. She is a life. Full of promise, and hope, and courage. 

The national cancer research budgets allocates only 4% of its annual budget to childhood cancer research. 4%. And of that 4%, the amount devoted to DIPG is miniscule. Ridiculous. Unthinkably small. How can this be? How did I not know this? I read the following quote awhile back. 

It really hit home. I realized that we all have a mission of some kind. Often grown from a personal tragedy or hardship. Yes, it might be a little overwhelmingly sad that nowadays my Facebook feed is entirely devoted to cancer, children fighting for their lives, and asking for financial help. I am not sorry about that though. She lives with this every moment and so will I. As she fights for her life, the least I can do is speak of her courage.

Bottom line. Life can change in a heartbeat, appreciate the moments. That isn't just a quote, a feel good sign to hang in your living room. It is real. I know that our minds can only absorb so much reality at a time. I realize that despite the darkness GOD IS GOOD. THERE IS HOPE. Don't feel sorry for us. 

I have a new perspective on others who may look, walk, talk, or live differently. As I walk through the grocery store, hand in hand with my hero, I see the faces of curiosity, sometimes pity from those who pass by. A little girl, unsteady on her feet, a big red service dog at her side. I know they are thinking "What has happened to her? Why does she have a service dog? What is her story?"
I know that their curiosity is not malicious. I find myself so proud of walk beside her. If they only knew. Big battles, little warriors.

Sitting here tonight, odd thoughts rambling through my mind and jumbling onto the keyboard. I don't know what my goal of sharing this was. Just felt like I needed to capture them. Thanks for being here with me. For me. For all of us. And mostly for my little Julianna. Who inspires me and drives me to pray for heaven like I have never prayed before. 

She is teaching me to live NOW. She is teaching me to love with all my heart NOW. She reminds me that the life we have here is merely the foggy moments before the sky clears and the light breaks through. Her courage and bravery fill me with the yearning for heaven. Please come soon Lord. Thankful for all of you who have been here for us and for our Jesus who has never let us go...