Transplant • 2017

I started a paper chain out of a rainbow of colored construction paper that evening and wrote the words that were echoing within me all day, “Day minus-10: Let the healing begin.” The idea was to add a slip of paper each day to mark the time Ryan spent in the hospital. We didn’t know how many days it would be, but I wanted a visual reminder of this season.

Within our evolving community, there was a team of people willing to help with the many moving parts. To send a gift card. To deliver a meal at the hospital or home. To remind us in tangible ways that we were not alone.

High schoolers showed up each morning and afternoon, playing with Geoffrey and Sharon, reading a book, doing any task assigned by Mama Micah. And Baba Micah remained on standby, ready to be UberMD as duty called.

Everybody played their part, little by little, to get a monumental job done.

As marrow ran into Ryan’s body, Titus played “Taunet Nelel,” a song by Kalenjin artist Emmy Kosgei. The translated lyrics say, “It’s a new beginning. There’s new thinking—look at it! God is saying, ‘I am doing a new thing. Don’t look back.’”

One hour and fifteen minutes after the transplant began, it was finished. The clock stopped, and now came the waiting and watching, hoping Sharon’s marrow would find its home in her brother.

The Risks

Day plus-8

Ryan spiked a fever. Antibiotics were changed to broaden the coverage for infection as Ryan’s body didn’t have any immunity to fight off even simple, everyday exposures. Blood cultures and nasal swabs were sent to see what might be going on. Also, his daily labs were showing concerning trends. His liver enzymes were starting to rise.

I didn’t know a greater level of uncertainty and untellable suffering was on its way.

Day plus-11

“It’s time for Ryan to move to the PICU,” Dr. Federman broke the news. “His liver is failing, and it is going to get a lot worse before it might get better.”

All I could do was nod. My red, tear-stained face knew what Dr. Federman said was true. His communication, especially the non-verbal parts, told me that he cared.

“Juli, you need to continue with your paper chain,”

my mom lovingly prompted me as we sat next to the window in Ryan’s room. “Keep adding slips of paper. Ryan isn’t dead yet. His story isn’t finished.”

Sitting in the PICU, I felt more clumsy than surefooted, but I also wondered if perhaps courage was simply about showing up when you were afraid.

Day plus-51

Sixty-one paper chain links filled Ryan’s windowsill on the day we were finally told he could go home.

Days and weeks led to months by now, and we were becoming a family. Sharon and Geoffrey were no longer just Ryan’s siblings, they were our children too. None of us really knew what it meant except that it was true.

Two months after Ryan returned home, it was time to begin the process again for Geoffrey. 

It was too soon. Too scary. Too much. 

 

But we loaded up the car anyway, and Mel drove as I sat in between Titus and Geoffrey in the backseat.

Titus held my hand as I leaned my head against Geoffrey’s car seat. We made our way back to UCLA.

 After all, this was Geoffrey’s greatest chance at life.

A little boy needed me more than ever before, not to be Mama Ella but simply to become Mama. This seemingly subtle shift was monumental in our evolving relationship and within my identity.

He needed my lap to hold him. My voice to tell him it was going to be okay, even if I was not convinced. My encouragement to eat a few bites, to take his medicine. My hands to hold the plastic bucket when the choking wouldn’t stop. He needed me to be present.

Now. Here.This.

Geoffrey's imagination was remarkable to witness.