Sis and Julianna

Sis and Julianna
My Hero

Saturday, February 11, 2017

The Choice


The Choice


Every time I click on my Facebook icon, my heart is filled with a mixture of interest and dread. My newsfeed is filled with the faces of little warriors, fighting for their lives. Will we lose another child today? Who will it be? Oh no...another new diagnosis. The knife pushes deeper in my heart, bringing back the haunting grief of those first few hours, days. Shock, anger, disbelief. Another family is living that nightmare. Another child cries. Their childhood is now gone. Yesterday playing soccer, today blood draws and biopsies.

The past few days have been heavy ones for me. Nothing in particular has happened. Just the weight of reality. I can't scroll past them. These little warriors. I must stop and read, pray for them and their families. Read the desperate words of their Mommy's and Daddy's crying out for guidance, answers...Hope.

Honestly, there have been moments when I could not see the light. When the choice to believe was all I found. Yet He manages to find a way into my darkness. A word, a song, a message. A sliver of light to hold onto.

The question has been asked of me, "If Julianna is not healed, will u still believe that God is good?" My immediate answer was "Of course I will." The answer so quick to come to my tongue. Based on a lifetime of experience with Him as my friend and Savior.

In these past few days of darkness, the devil brought that question back to haunt me. "Why would He still be good? He has the power to heal, but if He doesn't, He can't be good. Right? They say there is 0% chance of survival. Many other families are praying like yours. One by one their babies are dying. Why pray then? What good is it going to do? A father who doesn't save an innocent child? How good could that be?"

When awake I can only whisper the name of Jesus to chase these doubts and fears away. But in the wee hours of the night. When the insomnia is strong and the darkness close, I find it harder to manage them. The apparent logic of these tempting fears play with my mind.

This evening I scrolled thru and read the words of a DIPG mom who lost her baby girl. Her honesty is refreshing. Her pain is real. Her faith is inspiring. She was an instrument of our friend Jesus in that her words reached my faint heart and filled me with some peace. Thankful for the ways He speaks even when His child is feeling weak.

"You've kept track of my every toss and turn through the sleepless nights. Each tear entered in your ledger, each ache written in your book." 
                                       Psalm 56:8

Each tear that rolls down our cheeks, He holds in His hand. Each toss, each turn, He knows them. Of all the millions of people, in all the corners of the world, he sees us. He knows the worries in my heart. He hears Julianna's heart, her fears, her dreams. Nothing is unseen. It matters. Our feelings count.

"To all who mourn, he will give a crown of beautify for ashes, a joyous blessing  instead of mourning, praise instead of despair."
                                      Isaiah 61:3


This isn't the end. Though the devil prowls around ready to whisper words of doubt and fear, while the darkness of reality can be crushing, God is GOOD. It is the very fiber of who He is. What happens here counts. Even thought we are small, His heart beats with love for us, our pain, my tears, our sleeplessness.

I have only to be reminded of the bravery of these children as they fight this disease. The dedication of those who tirelessly advocate for them. Though I have no answers I know HE LOVES US. I know that HE IS GOOD. He can bring peace in the midst of this disgusting world. A world the steals the lives and dreams of the innocent. He is bigger. We have only to sit still.




When I don't feel it...I Choose Him.
When I am afraid...I Choose Him.
When I see no hope...I Choose Him.
When every day brings more closed doors, and less options...I Choose Him.















Thursday, February 2, 2017

Ohana

Ohana


This is our last morning here in Oahu. I am sad, content, unsure, trusting, nostalgic. How can so much be wrapped up on a place I have never been before and have only spent five days? 

I have wanted to come to Hawaii for many many years. It always represented a place to relax, sit, do nothing, contemplate the quiet and life's noise. I imagined sipping icy Dr. Pepper while my toes dug into the hot sand. The warm sun on my shoulders and the cool water on my feet. I thought I would see the vacation-ness of Hawaii. The surf, sand, and sun. 

As I sit here on my last full day here on this island paradise, I find that my experience is totally different. While this island has held plenty of sand, sun, and beauty, I will not remember it for those stereotypical qualities.

Mom and I were sitting on our hotel balcony moments ago, watching the paddle boarders, the black outline of the mountain standing guard over Waikiki, the sound of the waves hitting the creamy sand, the smell of flowers wafting around us....We both had the same impression at the same time. "I never want to come back here...and I want to live here." 

We take away from Hawaii one word. One memory. One deeply rooted meaning.

Ohana
Family

As part of the hawaiian culture, the word "Ohana" means family. The word was made popular by a movie I have never watched but there is so much more then a Disney-laiden meaning here. 

The word comes from "Oha" which is a highly revered plant. It signifies that all Ohana come from the same root. The "Oha" is the part of the plant that is planted to become the next generation. Ohana is your family by blood, my adoption, my intention. Your Ohana nourishes you, protects you, fights for you and with you. 

It means nobody gets left behind or forgotten. They are who you are, who you stand alongside and fight with, who you love with and would die for. They are your core. Part of your heart that lives outside of your body. Your tribe. Your people. Ohana. 

There is so much we have experienced together on this trip. Laughter, smiles, giggles, skipping with joy, blue tongues from shaved ice, floral skirts, and sandy toes. Dolphin kisses, submarines, and swimming. Four precious children hand in hand walking down the sidewalk, the hallway, the beach. FOUR. All together as it should be. Julianna holding Samuel's hand protectively as we traverse the sidewalk traffic, tiki torches shining in their eager eyes as she chats about where we are going and he looks up at her with reverence and heartwarming adoration. She is his person. Always has been. It is killing me to think that she may not be here to watch him grow up...

Ohana

After this trip there is part of me that thinks it would be too sad to come back here. Yet no. No matter the future, no matter what comes next, Hawaii will always hold these moments for me. Ohana. together. All eight of us. As it always has been. As it should be. Standing, hand in hand, as the waves of life crash against us. Sometimes in a line of solidarity facing the storm and others in a circle of prayer...but always together.

Ohana

This will always be a place of family to me. A place we all experienced in wide eyed new-ness at the same time. A place that brought Julianna joy. I am thankful for this.

I want to stamp this into my soul. These memories. These moments. My Ohana. I love each of them with my life. I wish I could have DIPG for her. I wish I could bear this cross instead. Her grace, her faith, her heart is beauty. 

She is my Ohana. 

As we head back tomorrow into the snowy Walla Walla world, back to hospitals, MRI's, infusions, results, pokes, and DIPG, may we hold onto this place. May it stamp itself onto your hearts.
Ohana fight together. Ohana fight for and with each other. we will stand beside her. We are Ohana.
Thank you Jesus for being our Ohana too. For fighting for us and dying for us. Thank you for these days and for my Ohana. 

Please come soon and take us all home...