The last five days have been surreal, in so many ways a scary sort of nightmare.

On Sunday morning, I was up early and preparing to speak in the services at Christian Assembly. . Titus’ sister, Linda, had spent the night with Ryan at UCLA. I reviewed Ryan’s 3AM lab work online and saw that some important values, especially his liver enzymes were off. In talking to Ryan’s nurse at the hospital, he explained that Ryan was most likely developing a horrific complication of transplant known as venous occlusive disease (VOD). He said that Ryan’s condition was deteriorating and that Titus and I should come.  Mel drove Titus and I to the hospital in silence. The weight of this diagnosis was more than a little heavy. It was devastating.

Just the night before, I had spoken at CA about what it means to live with gratitude when you are in the middle of the story (Here is the talk). Before the healing. While there are still unanswered questions. When life feels hard.

I did not know that I wouldn’t be speaking about “being in the middle” three more times on that Sunday. Instead, a greater level of uncertainty, steady tears, and untellable suffering was on its way.

By Monday, Ryan was moved to the ICU. His liver was failing. By Tuesday, dialysis was planned. Wednesday would lead to a baby too tired to keep breathing on his own, requiring intubation. Darkness. Darkness. More darkness.

Thursday involved trying to get fluids balanced, blood pressures maintained, keeping Ryan warm, and constant adjustments to keep our sweet boy with us. We could no longer hold Ryan in our arms. While that is certainly among the losses to grieve right now, I am aware of a loving God whose goodness is unchanged by this situation. I am certain of God’s love for Ryan.

I have been thinking so much about when I first met Ryan wrapped up in a pink blanket. He was all of the three pounds, surviving against so many odds. Each day, I was praying for him to grow just a little. Nineteen months later, I find myself praying again, or maybe just still. For another day. For healing. For another chance to hear him laugh.

I am waiting and watching, hoping and praying. While this week has been the most excruciating week of my life, I have felt the warmth of community, the prayers of the world, and the undeniable gift of having an exceptional medical team who have been caring for our family.

We are in the middle of the story.  I am determined, as a friend has encouraged me this week, to not get ahead of God. Be present to the moment before us. Asking and aching, with each breath, for a miracle.