Uncertainty
During days of waiting filled with uncertainty, how is one to live?
The last time I wrote on Substack, I wrote about how there is no handbook, no guidebook, no map that provides directions for a mom who has an adult daughter in need of a liver and a kidney transplant.1 As I wrote, we all were hopeful that the wait for my daughter to gain those vital organs would soon be over. We looked forward to the next Thursday, the last one in August, when we hoped a surgery date could be set on the calendar.
Thursday, August 29, 2024
The day had finally arrived when we would know for certain if my daughter Keicha would be donating a portion of her liver to her sister Amy.
In the middle of the day, I was sitting on the back deck, a closed book in my lap, with my eyes closed, breathing deeply as I impatiently waited for my vision to get back to normal after experiencing the sudden onslaught of an ocular migraine.
A kaleidoscope of colors and shapes of fractured vision had without warning suddenly distorted words on the page in the book I was reading. My vision was not the only thing disrupted in that moment. Internally, I felt I was reeling from the experience. As always, the ocular migraine, short lived but scary, left me disoriented and exhausted. It came at a time when I’d gone outside intent on just taking a breather from household duties.
As I sat waiting for the symptoms to subside, my cell phone rang. My oldest daughter was calling. I expected the call. I was looking forward to the call, hoping it would bring the long awaited end to our quest to find a donation of, as Amy herself has said, a sliver of a liver.
As I answered, I could only hear Keicha crying. Were they tears of joy, or something else? Then, she said, “I can’t do it. I have three bile ducts.” The results were in and she was ruled out.
In that moment, as a response to tears and devastating news, I became a woman speaking what I hoped were soothing, reassuring words to a daughter I knew needed to hear them, but I felt numb inside. I could not let myself go to that place in my heart where the full impact of what Keicha’s news meant to the uncertainty we hoped was behind us.
I needed time to process all that was swirling around inside me. Suddenly all I saw ahead for us was more uncertainty, more waiting.
Uncertainty Shift
As we awaited news about whether or not my oldest daughter would be a live liver donor, my uncertainty about the future focused not just on Amy’s health, or Keicha’s but also on:
how I’d face going through the day when both daughters would be on separate operating tables on the same day. Now, I would not have to ever again go back to all my worries, fears, concerns, and actual terror about all the unforeseen possibilities such a day could bring.
Now, I no longer had to wonder how I would cope knowing as one child was being sliced open to give up the right lobe of her liver, the other would soon be sliced open to receive that very same life giving liver.
Now I would not endure fear filled days in that first week when both would be in recovery.
The news brought some relief. It meant that now:
I didn’t have to worry about how to be caregiver to one daughter while trying to navigate how to be fully present and ready to give needed care to the other.
All those conflicted feelings of dissonance that stirred up fears of possibly creating divided loyalties over how care for one get might mean I could not care as well for the other dissipated.
Even as the complex feelings I carried for months left me, I did not like that this shift in uncertainty meant: now we were suddenly back where we were months before. We had no viable living liver donor for Amy.
Astute awareness begin in the recesses of the mind in our responses to the unexpected.2
After the call, I could not sit back down on that back deck glider to pick up the book I had previously been intent on reading.
I had to do something!
My response was to pick up my scissors and walk over to the leggy, lack luster, late August petunias in the pots hanging around the deck.
Spring’s hope of summer beauty was fading fast, as it always does in August.
It felt like my life depended on my need to trim things up, to get rid of the now dead growth of what once had been flourishing.
Each dead bloom from all those plants was hurled into the yard as I shouted over and over, “I don’t believe it. What now?”
I said this even as I knew what the news meant. The what now meant now Amy would be listed for a cadaver liver. It meant she does not have the assurance that getting a new liver was imminent.
It meant she was back to waiting.
It meant we are back to waiting.
Emotion needs motion.
I soon ran out of petunias and geraniums to cut back, but I was not done with deadheading. I was like a woman on a mission. I grabbed the clippers that hung in the garage and vigorously attacked my daisy plants. My clipping and clipping soon gave way to chopping off the deadheads of massive plantings of what once were cheery white and yellow daisies whose sunny faces brightened my days all through July.
I was like a mad woman.
The lavender plants were not spared.
They too were past their prime. They were not blooming either, so why should they not be sheared down to how they looked before they bloomed so beautifully earlier in the season?
Uncertainty is wisdom in motion.
Somewhere deep down inside the “recesses of my mind” my need to move, to expend energy by furiously cutting back plants really meant I was hoping for a second blooming to be the end result of doing a task over which I did have a measure of control.
A second blooming of summer flowers is possible and glorious in later fall, but it happens only if dead growth is cut off.
Future blooming always requires the hopeful cutting away of what once was beautiful for new growth happen.
I had no certainty as I made deep cuts on the plants past blooming, but I needed to know that by expending some energy to give them a second chance, I’d at least know there were possibilities for more growth and blooming to come.
Whispered more like a prayer than a demand, I spoke lovingly to my plants, “I need you to re-bloom. You are capable of a second blooming.”
As I cut, and snipped, and tried to bring order to a garden that was looking uncared for, I listened to Maggie Jackson’s words3. I heard her speak of John Keats and how he asserted life’s complexities “demand an intense unassumingness he calls:
negative capability, a capacity to dwell in “uncertainties.”4
Amy called me later in the evening to talk; then, I sat down to record some of what I was thinking in my journal. I needed to sort out what it meant now that we all were back to square one, where there was no viable liver donor for Amy for the present time. 5
Thursday Evening, August 29, 9:19 p.m.6
A roller coaster of a day made better by Amy herself. Amy so often has the best advice of all for me, and today it came in the form of what I am seeing as her capacity to live well in uncertainties. She is more into talking about her flowers, what’s blooming, and what’s not. She speaks of what to give up on in the garden,… or not. She says, “Maybe it just needs to be trimmed up.” She’s into her orchid and what its doing, but says Greg (one of her plants) is drooping. And she talked about the dogs and her daughter’s dating life. In other words, she living her life even as she did not get the news she had hoped for. She is going on - she has been “listed.”7 Her insurance has been contacted and they are waiting for approval. Commenting on Keicha, she said, “You know Keicha likes to be in control, but I told her, “… this is not anything you can control.”
Amy demonstrates to me, as she has time and again, she is developing the capacity to dwell in uncertainties. I’m learning how to do the same from her.
Unless we honor the discomforting work of not-knowing, we squander the potential of a perceptive mind.8
That’s where Amy has gotten her power to know things she doesn’t get from books, I think to myself. She is perceptive, always has been.
She also is willing to head into the unknown knowing there is nothing we can know for certain in this world anyway.
She is in that place where there is much “tension from conflicting elements9” about life. Life can be perilous and full of uncertainty, but it also is full of flowers blooming and beauty, and dogs to feed, reprimanded, and cuddled, and peach pies yet to be made.
In Times of Uncertainty, Remember to Celebrate the Gifts Each Day Brings, The Small Ones, and the Big Ones.
“We do not remember days, we remember moments.”10
Earlier in August, on a day when Keicha has a multitude of tests, and Amy has a doctor visit, my two girls and I and Amy’s husband have lunch in the hospital cafeteria as if that is what all mothers and daughters do on a regular basis on any given Tuesday, but this has never been true for us. The part about having random lunches together has never been something we have been able to enjoy.
We’ve lived most of our days separated, living in two different states since Keicha was thirteen and Amy was eight. If we can have lunch together, we are going to enjoy it a whole lot more than a lot of families enjoy forced togetherness at any given holiday that is on the calendar that calls for demands the family get together.
Each gathering, no matter how simple or impromptu, is pure grace simply because we are together. We never know when we will have these precious times. I guess my girls learned to live with uncertainty early in life. I hate they had to learn it, but it has given them resilience, and wisdom, and it has made the unexpected times together all the sweeter.
We’re At A New Juncture in Time
At this juncture in time, we wait. I don’t know where Amy gets the courage, the strength, the tenacity to wait, but I know this girl. She is a born fighter, and she’s a tough one too.
These Days Remain Days of Hope As We Look to The Future
As I wait, I remind myself:
hope has never been about what we can see.
Trust means you have to trust.
Faith is a walk of faith - not of sight.
As a family, we remain hopeful as we look forward to the day that Amy receives the gift of life from another. Please join us in this hope, and in praying that her wait will not be long.
~ Sally
The Is No Handbook
On January 1st of this year, my daughter Amy and her husband Jewett drove the nearly one hundred miles from their home to mine so we could have lunch together and exchange our Christmas gifts. Amy gifted me with thoughtful gifts wrapped in creative ways just like she always does, and she made sure I had the t-shirt I asked for, the one like Taylor Swift…
from “Uncertain: The Wisdom and Wonder of Being Unsure” by Maggie Jackson.
Ibid.
Ibid.
Amy had spent the first three days of the last week of August in the hospital undergoing aggressive dialysis to get her ready for surgery. She also learned her sister would not be her donor. She returned home to her house, her husband, her dogs, and her garden and called me later in the day to talk about the news.
An entry from my personal journal.
This means she has been placed on registry for a cadaver liver.
Ibid.
from “Atlas of the Heart” by Brene’ Brown
A quote from Cesare Pavese
“Uncertainty is wisdom in motion” and “honor the discomforting work of not-knowing.” Wow, you have a zinger here, Sally, and I am just in awe of your ability to apply your amazing writing skills to this painful journey you’re on — in a way that honors everyone involved and gifts your readers with wisdom and insight we wouldn’t have otherwise.
You write that your daughter has wisdom. You do too. Your words have captured a mother's heart and the struggles we must sustain ourselves through. A mother's heart never stops and a child's need is real even when the child is an adult. Prayers for all of you. (my mantra...stay in today)