The five year old who lives in my house often is faced with seemingly “huge” decisions – “What should I wear today?” “What kind of sandwich will I choose for lunch?” “Which story would be best for Mommy and Daddy to read to me before bed?” In all sense of reality in the mind of a five year old, these are very serious decisions (hence, they take FOREVER to make)! Then come more decisions as a teenager and young adult and a working professional. In defense of all educators, I think I made approximately 1,000 decisions every day in my classroom.
Some decisions are easy and light and others weigh you down like a ton of boulders, often not even resting on your shoulders but crashing down over a cliff threatening to bury you. And that, that’s the type of decision we’ve been making…
As described in my last post, our youngest baby girl, Myka Joy, was born and quickly diagnosed with a rare genetic disease. One of those first nights, in a room where we found ourselves pleading for our daughter’s life, one of the genetic doctors mentioned the words. The words that seemed crazy at the time and are reality now. Liver transplant. They made my head spin but weren’t the greatest concern in those moments. In the months to come, the doctor would continue to talk about the possibility, and I found myself always in tears on the drive home. Finally, our little girl was doing better, growing, and we were wrapping our minds around our new “normal.” The last thing I wanted to consider was a life threatening, life altering surgery.
Sometimes God takes us through what we don’t want to make us into who He wants us to be.
And that’s what He’s been doing with me. Since that night when we rejoiced that Myka survived, He’s been slowly, ever so graciously giving me time, showing me that a liver transplant is our best decision for our little girl. We’ve been blessed to speak with the world’s leading researcher for MMA, and he is in agreement that transplant is a good option for Myka given the severity of the onset of the disease. Her MMA has been managed well, but it’s not going to stay this way forever. Growth happens in spurts — sometimes it’s plain to see and sometimes it’s happening without visible observation. Myka’s growth is slowing down, which means the chances of complications from her disease will be more likely. A new liver will not cure Myka. It will hopefully decrease the long term complications of her disease, preserve her kidneys for a greater length of time, and give her a better quality of life. And it will add a whole new set of post-transplant complications and medications. It’s risky, it’s scary, it’s not what I would choose to be choosing for my child.
But in it, I’ve seen God’s heart in ways I couldn’t have imagined. The mystery of God’s heart is not lost on my finite mind through this decision. As He watches me struggle, make poor choices, grow quickly and then slow down… His heart must ache the way mine does for Myka. As He allows these trials to come into my life, He sees the bigger picture and doesn’t allow the pain for my short term comfort but for my long term quality of life. His quality of life is this: for me to know Him, to trust Him, to walk with Him, to share Him.
We are choosing to put our baby through a tremendous amount of pain. Tears roll down my cheeks (again) as I think about it. So much emotion in this one decision – fear; grief for a family we don’t know but pray for who will experience loss; deep, fierce love; and most of all hope.
Hope that this will help Myka during her life on this earth.
Hope that this season of transplant will teach me more about Jesus than I ever knew before.
Hope that God loves my baby girl more than I ever could and is writing a better story for her life than the best one I could dream up.
Hope that He will renew our strength day by day and prove Himself to be faithful yet again.
HOPE that this world with all of its ugly, dark, fallen disease is not our home.
HOPE that I’ve made a bigger decision that this before – I chose to trust Jesus and was brought out of darkness into light.
HOPE that this huge decision isn’t so huge when compared to the greatness of the God we serve.
Each decision ultimately comes down to us weighing what we know with what we hope is best and then choosing to trust. Here’s what I know — “Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” Psalm 20:7