Is my Evie going to die? This was the question terrifying me as my husband, John and I drove from Dallas to our home in Austin on a cold and rainy December 26th morning. I feared we would lose our youngest grand-baby at 10-months old. Yet, I tried to maintain some hope that she would pull through, as she had fought for so long already. She made it through liver surgery at 2-months and heart surgery at 8-months. Now at 10-months her heart was failing.
I felt so helpless knowing that there was nothing I could do to change what was going to happen to her. She was in Dallas’ Children’s Hospital Pediatric Intensive Care Unit and the staff there was doing everything they could to keep her alive for a heart transplant as soon as an organ became available. I kept thinking about her being on a ventilator, on a machine called a ventricular assist device to help her enlarged and damaged heart, and now they were going to put her on dialysis to assist her overburdened kidneys. My fears were that surely no one could survive that much organ support, especially not a baby.
The night before we had a generous Christmas dinner at the Dallas Ronald McDonald House with our daughter, Becky, and her family. There were so many other families with sick children staying there over the holidays. The dining room was full of good food smells and the sounds of children happily opening gifts. The volunteers made sure that everyone received a present. A smiling volunteer handed me a small package wrapped in festive paper with “female” on the gift tag. I had to chuckle to myself at the impersonal address, but after I opened it to find a little notebook, I was very pleased and thought, “How appropriate for a writer.”
As my husband drove through the slight mist towards home, the uncertainty of Evie’s fate had me thinking about how we make plans with a certainty that we will complete those plans, but we don’t really know what will happen. The course of a life can change with a phone call.
I had to get these thoughts on paper while they were in my head. From my purse on the car floor, I pulled my new little Christmas gift notebook and wrote the following words in road-jostled handwriting:
I have this thought like a
sprite
pixie
fairy
Flitting
along
beside
behind
intermixed
With every
plan
promise
commitment
That I make.
While I
want to
plan to
make
do
accomplish
the thing I planned,
Another something might happen that is
more important
supersedes
interferes with
Those plans.
This is always true
Regardless of whether or not I
acknowledge
realize
know
That truth.
Sometimes in certain situations this knowledge is closer to the surface than others.
At this point in writing the poem, my phone rang. I saw on caller ID that it was our daughter Becky, Evie’s mom. With some trepidation I answered it.
“Hello.”
Becky whispered, “We have a donor.”
“No! Oh, my God, really? That’s wonderful!” I exclaimed.
“Yes! I can’t believe it. Where are you?”
***
The next day after a phone call assuring us that Evie had survived the transplant surgery I finished the poem. Still no one knew if she would survive the post-transplant or not, but at least there was more hope now. I added these lines:
In certain circumstances this knowledge is
Crystal clear
Absolutely understood
Sure.
The uncertainty of plans becomes very real in extreme situations
After a biopsy
The end of a life
The need for a donor organ
It feels like
A limbo
A floating foggy space
A gray uncertainty
Of too many possibilities
In which I know any plan I make
Could be
Might be
Is hoped to be
Unmade in the beat of a heart.
The donor’s family thought they would spend more time with their child who died. This uncertainty of life is so foreign when your child is healthy. The sad fact is that accidents happen, even to children. What generosity they showed in donating their child’s heart for a transplant. We love and honor that unknown family for their gift to us.
Evie made it home though it took several more months of hospitalization and therapy. She and her parents are dealing with loads of anti-rejection drugs, antibiotics, and special needs. We enjoy and are grateful for every day we have with her knowing that her future is precarious and uncertain.
I’ve written many more poems about her and her brave family as uncertainty pushes me to the edge of my world and opens my creativity.
© Susan Corbin, PhD. A version of this essay was published by Story Circle Network in June of 2018
This is such a heartwarming post. I know it was a difficult time in your life as well as your daughter’s. I look forward to reading your poems about her and her brave family.
Thanks, Barbara. It was a very difficult time. However, she is doing very well considering what she has been through.