Guide Us Home

I have been told that I can write. What you may not know is that I have struggled with a love/hate relationship with writing in the past. I always loved the idea of expressing myself but found it frustrating and difficult. I wanted to be an English major in college but after one too many times of losing my papers to computer issues, I threw in the towel. 

I only found the beauty of writing again when I had Ava. She was my inspiration. And now my inspiration is dying.

She woke up whimpering last night and we gently shook her awake. "What's wrong, Ava?" we asked. She told us about the nightmare that has been plaguing her for some time now. "You were on one plane and I was on another. And I wanted to be with you," she explained.

Are there words in our English vocabulary to explain this type of searing pain? If there is, I don't know them. I must learn them because I will need them.

After a bone marrow biopsy on Monday, we waited impatiently for her results. On Tuesday we got the call that there was a small amount of detectable disease in her marrow...

I want to end this post here because my temporary hopelessness calls out that it doesn't really matter what I say after this. There are options, there are therapies, but the truth is, Ava has fought long and hard already and the cancer has come back.

We met with the oncologist yesterday. There is a 50% chance she can get into remission, and then she will have to face the smaller percentage of hope that a second transplant will offer. So we talked about what no parents should have to discuss. 

We talked about death.

We sat there in that little room, on blue plastic chairs, and talked about what death would look like for my little girl if we let the disease run its course. He explained that she wouldn't feel pain, that they would promise to make her as comfortable as possible. What he doesn't know is that greatest pain for her is not so much the physical but the emotional, the spiritual pain of not being able to stay with us. And then we talked about what death would look like if her second transplant produced crazy amounts of GVHD. It would be painful and hard. 

We weren't just talking facts and statistics, we were talking about Ava. The same Ava that told the nurse, "Thank you," after being poked for an IV. The Ava that would brush the hair from my face and say, "I love you so much, Mama." The Ava that we have nursed back to health again and again. Ava, my girl, who has known suffering most of her life. This child who has brought unspeakable joy and laughter into our lives. My daughter who has left her imprints all over our house in drawers hidden with sweet notes, in misplaced toys under the bed, in countless memories we have shared in each room. Ava, my first born, whose sweet voice would sing praises, whose small hands would wrap tight around our heaving shoulders, whose tear drop eyes would turn up or down in laughter or sadness, whose soft cheeks would receive our kisses, whose little body would curl into ours, whose bright spirit would call for us to play and to live and to hope. 

Before we could even make a decision regarding whether or not we would go home to celebrate Christmas in Chicago before coming back for treatment, Ava has been admitted to the hospital. The cough and low grade fever that began on Monday is now full blown and there are herpes lesions in her eyes. There are also bumps that may indicate more cancerous lesions under her chin. We rushed her to the ER at 3:00 am after a fever of 102. We did not anticipate this situation at all. As I packed for Seattle, I purposefully put in 4 changes of clothes for each of us. We fit all of our belongings in one suitcase. There were no goodbyes, no cherished moments of sleeping in our bed altogether, no need to believe that we may not return home as a family of five. As the three of us lay in that small hospital bed this morning, I prayed that God would preserve this family. He could take it all. Our house, our cars, our degrees, our jobs, every dollar in our bank account, only please, could he spare this family, the only thing we treasure.

And then I put my shoes on and drove home to my other little loves. These tiny babies have been exposed to the atrocities of a broken world long before they have had a chance to fully live. I rushed home to find Jude had cried himself to sleep because he was so hungry from not being nursed. He was born at the tail end of Ava's transplant so even his birth story is mixed in with Ava's fight against cancer. He has been held and loved but he also has a flat head as a reminder of the times I've had to put him down to attend to the greater needs of his siblings. And then there's Gwen who asked why I came home without Ava. Her eyes flashed here and there searching for her best friend, Ava. Gwen has known grief. She has wiped tears from my eyes from a young age. She has gone days without seeing me or Mike. There have been weeks where her only friend was her iPad. This sweet girl, how will she cope without her sister? How will we parent her and Jude when our insides are scooped out and all that is left is a shell of who we were?

It seems cruel that Ava has relapsed in her skin. For most of her life she had such severe eczema that her skin was rough and cracked to the touch. After the transplant, her skin was so silky smooth that we couldn't stop stroking her cheeks and kissing her face. And then to find a life sucking, hope crushing, cyst there...

Oh God, what more could you want from our story? What more can be milked out from this experience? Will this chapter end only when Ava has died? Will it really be a lifetime of sorrow before we see the light and the beauty of your works?

I have been wondering if God's eyes are truly on us. I know, in my heart, that we are ever in his sight. But, my human heart stumbles at this point.

I find myself praying, "God, do you see us?"

We wipe her swollen herpes infected eye with a tissue. God, do you see us?

We brush our fingers under her chin to feel those sickening bumps. God, do you see us?

We watch her struggle to play although her body is weak from fighting off this virus. God, do you see us?

We strap her into the car in the cold hours of the morning to go to the ER. God, do you see us?

We tell her she looks beautiful when she asks if her eye makes her look strange. God, oh my God, do you see us?

We haven't told Ava yet. We don't know how to do this. As if our hearts are not broken enough, it is up to us to look in her eyes and tell her she is not done with this fight yet. As much pain as we feel, I will never fully know how difficult this journey has been for her and how much it will hurt her spirit when we tell her. But I hope that it will be enough for her to hear that we love her, and that we will never ever forsake her. And then I'm reminded that God loves us more. That His love is perfect and that His promises are true. He loves us and His goodness will be seen. But I am still flailing in the dark, trying to grab something tangible that will allow us to come up and breathe again.

I am wondering if maybe our hope for cure in this lifetime won't come to pass and we will have to look toward the hope of heaven. How we will endure the many many years without our girl, Ava, how we will stay standing when she is gone, seems impossible. We have called out to Him, asking that this cup be removed from our lives. It is too bitter to drink. We have made compromises that he cut our lives short and instead add more and more years to hers. Right now, there is silence and so we wait. My restless heart is searching here and there. Who can help us out of this mess? I want to run away from this situation but there is nowhere to go. Please bring us into Your temple and comfort us with the truth that You are near and that You have seen us.

Because we are lost at sea, oh Lord. Please, guide us home.