Ryan has become a bit of an acrobat these days. He woke up this morning at 3 AM and propelled himself with a front flip out of his pack ‘n’ play then proceeded to turn on the lights. He was very proud of himself. While Ryan’s speech is still limited, he masterfully said: “light!”

We put Ryan back into his bed and I remembered where we were one year ago… 

Ryan’s room had been decorated for Christmas with photos hanging on the walls, toys in a bin, and Christmas lights strung. I had built a little nest for our sweet boy to have space for healing to happen. On the Monday Ryan needed to move to the ICU, his body so terribly sick, I took the nest apart. 

The ICU was noisy – loud, continuous beeping of monitors and pumps that were working to keep our child alive. So many machines surrounding and tubes filling Ryan’s body. Teams of doctors from multiple specialties rounding over and over again. They were smart and experts in medicine but also kind and deeply concerned about Ryan.  

“How are you?” is such a simple question that we include in everyday greetings. During those dark days, the question was nothing but daunting to me. And yet it was asked over and over again. One time, I asked the doctor posing the question: “what would be an appropriate answer?” He paused, looked me in the eyes, and replied, “devastated.” Tears filled my eyes, and I replied: “yes.”   So much love, so much loss.

On this night one year ago, Ryan was no longer able to breathe on his own. We were ushered into the hallway as a machine took over to do his breathing. Ryan’s liver enzymes were skyrocketing. Transfusions of blood, platelets, and plasma were given every few hours. His kidneys were no longer functioning. Another machine needed to do the work for them. His blood pressure was plummeting. And the list goes on and on. Everything was so technical, but I knew in my spirit we needed more than science and good medicine to keep Ryan alive.

We fasted and prayed, crying out to God to intervene: to do once more the impossible for Ryan. It was Advent time, and we were aching as we waited.