Hope and Faith

 

And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. New Romans 5:5 

Five years ago, my daughter came home from a cruise and couldn’t shake her sea legs. Vertigo turned into severe fatigue, tremors, mental confusion, and difficulty standing and walking normally. She went from leading an independent life as a single, working mom who had just invested in her first condominium to needing to move back in with us while she took extended medical leave. We struggled to get a diagnosis locally and decided to take her to Mayo Clinic in Jacksonville with the hope that they would diagnose and treat her. Two days after arriving at Mayo, our hope was tested when she received a life-changing diagnosis of moyamoya, a rare, progressive and incurable disease that can cause transient ischemic attacks (TIAs), strokes, seizures, tremors, movement disorders, cognitive impairment, headaches and other neurological symptoms. 

Despite the diagnosis our hope lived strong. God had opened the door to a diagnosis; surely, He would open the door to healing. Brain surgery was the intervention that the internet revealed would allow her to lead a “normal” life. We went into our first surgery with high hopes fueled by prayers from around the world. Five years later, my daughter has been hospitalized 17 times, had four minor and five major surgical procedures including two brain surgeries. She is scheduled for a 10th surgery next month. 

There is a cumulative pressure that builds when life expectations go unmet. The “whys” become loud; the disappointments gain power; pain grows with each unanswered prayer. As time passes, it feels easier to guard our hearts from hope, than live with unmet requests. 

This past year has proven to be one of my daughter’s most challenging. She has been struggling with uncontrolled pain, hospitalized three times for breathing issues and is fighting a chronic infection. The rollercoaster ride has been steep and deep. Each visit to the hospital began with hope. As specialist after specialist indicated they did not hold the expertise my daughter needed to safely treat her, each departure left us feeling hopeless and hurting. Pain is a powerful motivator, but it doesn’t always lead us in the right direction. At some point over the last year, I stuffed hope in a drawer thinking my load would be lighter. 

But that action has not served me well. Hope is where Faith begins; Faith is where our strength to endure lives. When I put my hope away, I picked up disappointment, frustration and anger. In trying to lighten my load, I ended up increasing my burden. 

It is hard to unlearn a response driven by pain, but I am working on it. I am scattering seeds of hope each day through daily prayer and gratitude. I am watering those seeds by looking for God’s miracles. I am fertilizing them with the assurance that God’s love for my daughter exceeds my own.

Will you take up the sword?

 

There is no greater love than to lay down one’s life for one’s friends. John 15:13

My daughter is a unicorn. She is diagnosed with a rare disease, moyamoya disease, said to impact fewer than 1 in 100,000 people in the United States. Within her rare disease group, she is in a smaller subset of patients who have had a surgical failure. Within that group, she is in an even smaller group to have received a rescue surgery known as the omental bypass to the brain. Within the omental bypass group, she is the only known patient to develop a granuloma (tissue mass) within her omental bypass.

My daughter sees a total of eight specialists affiliated with five hospital systems in Virginia, California, and the District of Columbia. The difficulty with managing care across a geographically dispersed team is achieving cross-specialty collaboration and team consensus. In a normal setting this is challenging. With the backdrop of COVID (overflowing emergency rooms, reduced staffing, pressured medical professionals, limitations on non-emergent but critical services, delays in testing), this has been almost impossible.

The vaccine brought a huge sense of relief.  As part of the most vulnerable population, it not only offered our daughter a chance for increased protection, but it meant a return to medical business as usual. As vaccinations picked up, cases began dropping; hospital beds, emptying; appointments increased; non-emergent services reopened. And then vaccinations stalled. Delta took hold. ERs filled up again. Our relief quickly turned to frustration.

If you are still on the fence about getting a vaccination (and not precluded from taking the vaccination for health reasons), I am asking you to read a little further. The truth is, while I do not fully understand your hesitancy, I do not want to be dismissive of your concerns. There have been more than 338 million vaccinations distributed in the United States to date. Historically complications from vaccinations develop within the first two months of administration. We are eight months into emergency authorization. The data overwhelmingly supports there is a lower risk of developing a serious complication from taking a vaccination than from contracting COVID.

I am not here to persuade you to get a COVID vaccination based on a risk argument, however. Statistics do not protect us; they only comfort us. If you are the person who falls on the wrong side of a statistic, the data means nothing. What I want you to understand is your decision not to vaccinate has tertiary impacts; those impacts cause harm to others. As long as large numbers of people remain unvaccinated, the medical system will remain overwhelmed; critical resources needed by other patient groups (rare disease groups, cardiac patients, cancer patients, diabetes patients, etc.) will get diverted; new variants will develop that are more virulent, more contagious, and resistant to the current vaccinations. In the face of a large population of unvaccinated, the country remains vulnerable to resurgence.

I come from a military family. My grandfather, father, husband, and son-in-law all served in combat. They and soldiers like them, unhesitatingly, took on risk to ensure the safety of others. We are in a war against this virus. Vaccinations are our most effective weapons. We need more soldiers. Will you take up the sword?

Seeing Through God's Light

Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.
I want to believe I am looking

into the white fire of a great mystery.
I want to believe that the imperfections are nothing—
that the light is everything—
that it is more than the sum
of each flawed blossom rising and fading. And I do.

from “The Ponds” by Mary Oliver

A friend posted this section of a poem on Facebook. It speaks to my heart.

I want to be this person, the person who finds the glory in my story.

The truth is five years into my daughter’s life-altering diagnosis of moyamoya disease, there are many days I struggle to see past the world’s imperfections. The weight of what I cannot give her feels overwhelming. My joy tethers to her wellbeing. Life has taught me bad things happen, and fear can win my day.

Last week my husband and son-in-law built a magnificent tree house for my seven-year-old grandson. It is a little over six feet off the ground nestled between two trees with a sturdy ladder that attaches to the frame. It sports a large opening at the top of the ladder as a doorway and a window he can stand at to survey his world.

I smiled as my grandson climbed happily into his new home. Then I noticed there was no handle at the top of the stairs for my grandson to steady himself as he pulled himself over the threshold into the house. My eyes darted next to two small cement steppingstones that were being used to stabilize the ladder at the bottom of the six-foot drop. My head flashed to pictures of my three grandsons wrestling in the tree house, a favorite past time. From there my thoughts shifted to my youngest grandson being knocked out of the doorway, falling to the ground and hitting his head on the small cement paver at the base of the ladder. Joy had left the building. As we headed home that day, my head and my heart were churning.

At what moment, did fear become my lamppost? When did I become so focused on the safety net, I missed the show taking place above?

Was it the day the plane hit the Pentagon floors below the office where my husband was working? Or the day my oldest daughter had a seizure while snorkeling on a family vacation? Was it the moment I learned my 40-year-old brother-in-law’s heart stopped forever after making a goal in a soccer game? Was it the moment I read the words, incurable, progressive disease causing strokes, or the subsequent ten-hour wait in a hospital lobby during my daughter’s first brain surgery? Was it the day we learned she had her first stroke?

At some point, I started focusing on the flaws in my story and lost the dazzle in my story. At the heart of this poem lives an undeniable truth. Life is hard. No one is immune to life’s “imperfections,” but the power we give them in our lives is a choice. I haven’t been choosing so well lately.

I want to be the person who sees the world through God’s light and not through my fear.

And I do.