The thing with feathers that perches the soul

I have yet to figure out if I am an optimist, a pessimist, or a realist.

When I analyze myself, all the descriptions fit. I have a gift for seeing the good in all things and how something can go wrong, while at the same time, I always see a way out. 

After my infant daughter was diagnosed with a brain tumor, I had to resist the urge to speak to moms of babies with big heads who were shopping in the grocery store. I had to turn away lest I begin to assess those babies for head tilts or eyes turning, some signs my daughter exhibited before she was diagnosed. 

Some would call that being a pessimist — or a realist if the child actually has a problem with their brain.  Either way, I don’t think a parent would be pleased with recommendations for a brain scan coming from a stranger in the grocery store. 

Over the years, I discovered that I have an innate sense of how the human body works and an intuitive instinct when something isn’t right. One doctor used to call it “MOM-RI”; a play on the word MRI, a diagnostic test that produces images of the body from the inside. 

Because of life experience, especially in parenting a child with medical issues, I tend to notice things that others don’t and it’s sometimes hard for me to overlook something that might become important later. 

Hope has been my constant companion on my life’s journey. Hope is not some distant goal that I strive for. Hope is a quiet presence in my life that surrounds me and beckons me to move forward beyond my human strength. Hope is also the reason I can go to sleep at night knowing that tomorrow there will be new grace and strength to face a new day. 

Some might equate optimism to hope as the same experience with different titles. I think hope and optimism are quite different in their origin and their goal. 

Optimism deals with situations here and now which can only be altered through a change in circumstances. Optimism is limited to the here and now. Hope is present and elusive at the same time; it is not based on circumstance, rather it often defies circumstance and reaches beyond for something greater. 

Hope beckons one to look beyond the here and now —even beyond the grave. 

Hope is eternal. 

In one of her most famous poems, “Hope is the thing with feathers,” poet Emily Dickinson writes:

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

Dickinson compares hope to a bird, a feathered companion that is always present and yet sometimes elusive, much like the sweet goldfinches who are staying close to my sunflowers this time of year. My brightly colored feathered friends  have  been flitting around the yard all summer, watching and waiting for the sunflowers to bloom and the seeds to ripen. I know they are always present, even if I can only get a glimpse. 

In the last 26 years, I have entered a world that many people “hope” they will never have to see — a world of sick children, rare diseases without cures and exhausted family caregivers who are financially, emotionally, mentally and physically stressed. It has not been an easy journey. 

But even from the beginning, hope has been a constant presence calling me on to something more. Hope came in the meals brought to our door by friends and strangers, in the conversations with moms in the pediatric ICU and in a warm cup of coffee and in the words of consoling scriptures while in prayer in the hours before dawn.

Just last week, I came face to face with the reality of eternal hope. Only days after our first fundraiser for Johanna’s Hope, we had to rush my daughter to NYU because she was experiencing a life-threatening medical crisis in her brain. 

I read the radiology report and viewed the brain scan on my phone at 9 o’clock at night, hours after the outpatient MRI was completed. One of the ventricles in Jo’s brain had collapsed, and another ventricle was significantly dilated with fluid, causing pressure which was shifting her brain. 

I’ve picked up a few things over the years enough to know that this was a dangerous scenario. At the same time, Jo was stable and the doctors had been contacted. We decided to keep Jo home until I heard from the doctors or bring her in if her condition worsened. 

I didn’t sleep a lot that night because I was checking on Jo to make sure she was still rousable and that her pupils were responsive to light. It was scary, but somehow I knew Jo was safe and she would make it through the night without having a life-threatening emergency. 

I guess some would say it’s optimism — or even denial; I would call it hope. 

As I anticipated, the following morning, the neurosurgeon called and said that it was imperative to get Jo to the hospital for an emergency brain surgery. As we drove on the LIE towards NYC, I was very calm. And again, when I kissed Jo goodbye and prayed over her outside the operating room, there was a deep sense of peace that soaked into my mind and heart. 

While Jo was in surgery, I left the hospital, and walked up Third Avenue to the Chapel of the Sacred Hearts of Jesus and Mary. It’s one of my favorite places in NYC, a seemingly unknown gem of peace amid the chaos that is Manhattan. 

I sat there and prayed for Jo and contemplated hope. 

The apostle Paul wrote; “Hope is not hope if it’s object is seen.”  (Romans 8:24).  I think therein lies the difference between optimism and hope. An optimistic person sees potential where others may not. A person who chooses to hope doesn’t need to see potential because we hope even when there seems to be no way out. 

One of my favorite Bible verses describes hope as an anchor: 

“Hope anchors the soul; firm and secure and reaches beyond the veil.” (Hebrews 6:19)

This image of hope as an anchor reminds me of Dickinson’s description of hope as a song that never stops humming. An anchor allows a boat to drift in different directions, even to be tossed about on the waves, without drifting too far out to sea. Both the hum and the anchor are a constant, even in the chaos of our lives.

On the logo for our recently established nonprofit, “Johanna’s Hope,” we used the words, “anchors the soul” as a tag line to reference the Hebrews 6:19 scripture. Our nonprofit isn’t specifically a Christian organization, and hope is not limited to a Christian worldview. 

We reference this scripture precisely because hope is a universal message which beckons us to persist in the belief that good will come, even out of  struggles. 

We are building a little community of people with different abilities who come together to explore nature and art on Jo’s Farm. Each of us have  seen our fair share of very difficult circumstances. 

We met last week, just days after Jo came home from the hospital. I considered canceling the program so soon after surgery, but Jo wanted to host her friends at her farm. 

There was a lot of laughter and conversations as we explored Jo’s bee hives. I showed our friends how to handle the bees — and how not to handle them — when I got stung!

The hope was palpable, in these friends and even in circumstances where it would seem to be elusive: in wheelchairs, headaches, exhaustion and a head full of stitches. 

These young adults teach me to hope.

They laugh heartily and love without judgment.

They are kind to each other and always willing to lend a helping hand. 

We are a community centered around hope, the gift which anchors us in the crazy storms of life.

For more information on Johanna’s Hope visit: https://johannashope.org/