Wednesday, December 31, 2014

Laying Hold of Hope

I am in my 36th week of pregnancy. Up until a week ago, I would routinely forget that I was pregnant. My only reminders would be my biweekly trip to the OBGYN. Last week I went in for my checkup and barely managed to prop my body up on the table. My beloved doctor walked in and lifted up my shirt to listen for baby's heartbeat. She saw my jeans were hardly closed with the help of a very stretchy rubber band. "Wow, still rockin' your jeans!" she remarked.

Um. No. Me stuffing my legs into my pre-pregnancy jeans were not my attempt at being stylish. In fact, I was so desperate to find anything other than my tight jeans with the zipper gaping open that I tore around the apartment begging the Lord to help me find just one pair of black leggings. The only other choice was Mike's Korean pajama pants, and although blissfully comfortable, they seemed the least appropriate of all the choices. 

When I got home, I pulled off those jeans, laid down on the bed, and drew in a deep breath. Except that breath came up sharp and stunted like all the other breaths I had been drawing in for the past few weeks. 

I can't seem to breathe. My lungs won't fill up completely with the stuff that will satisfy and sustain me. I partly blame the shrinking space between my stomach and my chest but I know it's something more than that. 

A little over a week ago, we found out that Ava was MRD negative for the first time ever. I sat in the Ronald McDonald apartment and let Mike's words wash over me. "There is no evidence of disease. She has zero cancer cells." I listened, hung up, posted on FB, sent off a few texts, and then sat down. It was about 10 minutes later before I felt the tears. What did this mean? Is the nightmare finally over? Is Ava going to be okay? Can we finally begin to breathe deeply again? I allowed myself time to digest this news from every angle. Did this mean we could pick up the hopes we had gently put aside-hopes for this child to grow up and live a long and healthy life?

We celebrated this news with dancing and hugging and screaming and crying. But before long, I felt something scary trying to push up past my elation. This tiny button of fear threatened to steal my joy away. What if she relapses? What if the cancer comes back? How would we survive a second attempt at beating this disease? So I decided that I would forge ahead with a guarded hope, knowing that cancer often comes back to claim the body it was banned from. I see it in countless cancer surviving families, where we look toward the future with gratitude and yet are still haunted by ghosts of the past. We put up our defenses and temper our hopes in case we have to face another battle in the future. We no longer naively believe that bad things don't happen to good people or that we will be spared the sufferings of this world. We have been through too much to claim invincibility. 

Walking through the halls today, I bumped into a mom I had befriended in my earlier days at the hospital. She was back with her daughter because the chemo that was supposed to keep the cancer at bay while searching for more options had failed and the blasts had jumped from 2% to 90% in a matter of weeks. This was the child's 3rd relapse. Oh God, what words of comfort can you impart on a mama who has had her hope deferred that many times? Families that have seen the ugly face of cancer know better than to compartmentalize these stories and tuck them neatly away as someone else's experience. Because we know that it could be any one of us on the other side of that story. 

I'm unsure how my "guarded" hope looks to the world and to the Lord. Does it seem ungrateful? Do I look jaded? I don't know. But of this I'm sure. My God is kind. He sees my confused reactions to his miraculous works. He holds none of that against me. He tenderly calls me to complete trust in him, regardless of the situations or the outcomes. He calms my heart when it wavers at what my daughter looks like with all the steroids and other medications coursing through her body. He is compassionate when I forget to thank him for the overflow of blessings because my eyes are so fixed on the 10 different medications that I have to coerce Ava into taking without throwing up. He understands when I want to snap at everyone because the hospital room feels like it's closing in on me. He sees me gasping to pull in one deep breath of life. And instead of showing anger at my fear, he coaches me to go ahead and struggle, to keep fighting to hold on to hope with every ragged breath I take.

So while my breath still catches at the sound of Ava screaming from her GVHD pain, or the sight of her swollen face and bloated body, or her sad eyes trying to make sense of her discomfort, l suck in the air around me as greedily as I can and I fight to hope for a cancer-free future for Ava and her friends. I hope for the day that her hair grows back and she runs around free from the aches and pains of a cancer-ridden body. I hope to see her miraculously be granted the gift of motherhood and enjoy raising her children. I hope that she uses her experiences to gain further ground in awareness for pediatric cancer. I hope for many many good things in this lifetime for her. But, most of all, I fight to lay hold of God's solid unbreakable promise where faith, hope, and love abound and never fail.  


Heather Rocen said...

You are never alone in this fight. There are many many people in your corner to help you! Hugs.

Anonymous said...

Always precious to read your thoughts and share in your emotion. Wish you and Family a brightly Hope and Love filled 2015. That you continue to see His mighty hand and relish in His guidance. Best, siewkim.

Anonymous said...

2015 is new for your and your family, your words contact us with your heart. We best wish Ava are feeling best in 2015. You and your family be blessings! God with you and your family. Even my English is poor, but I can understand all your feel. Trust and depend Him always and ever and ever.Love!