Coming Home: A baby’s journey for a new liver

Dedicated to a baby at a crossroads, with my love and gratitude.

I sat rocking her in the crook of my arm as the sun set outside the big hospital window, patting her back and singing whatever lullabies I could think of, making up words and tunes. Singing the old cowboy songs dad sung to me, my throat tightened with fear for this little child and her trials ahead. Her mother was taking a much needed rest after sleeping only a handful of hours that week, and it was all I could do to try and bring them both a little comfort and sleep.

At only 6 months, Gemma was small with bright yellow skin and eyes and a painfully distended belly. She labored to breath, and would barely sleep. Even so, she was strong, smiley and unbearably lovely. I couldn’t control the tears in my eyes as they threatened to spill over. I nuzzled her close and stood up, taking great care not to trip or pull on the utilitarian lines that snaked from the tall chirping machine (her constant robotic companion) across the cold, sterile floor into her fragile little body. The injustice of it was shocking.

Gemma would need all the nutrients and tenderness she could get to survive the next few months of waiting.    

The wheels on the bus go round and round, round and round, round and round… I sang, her favorite song bringing a joy to her face that made the most hardened of pediatric nurses stop and give her much deserved praise and attention. I was convinced no baby ever had a sweeter smile.

As I rocked and cooed, I marveled that only four months before I’d been so very alone. The motorcycle journey across Oz was both cathartic and much needed for a battered heart, and coming home from Australia had been a dark, daunting prospect. Leaving the people and places I loved to come back to dreary old home seemed unbearable at times, but I had 3,000 miles of reflection across Australia to remind me that it was for the best, at least for the time being.

The hard transition to grey drizzle was somewhat alleviated by family and friends, and by the simple fact that I had only 4 months to prepare for a major expedition, one that would quite possibly push me to my physical and mental limits in the extreme climes of… Well, I’ll get to that next week.

Even with the intensive training- physical, mental and mountains of research- things still felt rough at times. Adventure and travel isn’t all fun and games, and something more is needed. Something more meaningful, more purposeful and ultimately less self centered. I had spent so much time mulling over what it means to lead a life of greater purpose, fulfillment, when an unexpected and powerful connection was formed.

In the midst of feeling that love was lost to me indefinitely, that more purpose was terribly elusive, I met Gemma, the baby daughter of a childhood friend. Within days of her sweet company, I found the deep well of love and emotion I hadn’t thought I could tap into. My chest burst with tenderness, my eyes burned with pain for her, and with her, I sensed what maybe it would feel like to be a mother, to know a different kind of love.

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But perhaps not one with less pain. Because from no fault of anyone but nature and chance, Gemma was born with a rare liver disease called Biliary Atresia. With no cure and a life expectancy of less than two years, Gemma was at a terrible crossroad. The risky surgery performed on her at just a couple of months old failed to provide her with a few more years of relative health that the doctors had hoped. And thus, baby and mom were flown on an emergency flight from their home in Hawaii to Seattle Children’s Hospital, where Gemma awaits a new liver. And with that, a chance at a full and happy life, with her own adventures, musings, loves, joys, heartbreaks, and yes, even existential crises at times.

And while she waits at this crossroad, I see her almost every day, and sing her favorite song while rocking her in my arms and feeling that perhaps love isn’t all lost after all.

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A message from my other lovely little baby niece, Livy!

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The translated version:

Friends, family and adventurers, unite!

Please consider donating to this non-profit fund for baby Gemma. 

Anything helps and everything is appreciated. 

 

Gemma now waits at the Ronald McDonald house near Children’s Hospital for a new liver and the chance of a happy, healthy life. Here she is playing with her new friend, my other niece, Livy, only one day apart in age. 

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2 thoughts on “Coming Home: A baby’s journey for a new liver”

  1. I made a donation and am praying for her, her family and you. I don’t have the words to say how I feel it’s a combination of sadness that this baby has to suffer but also I’m happy that you are feeling love again.

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