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.

A COVID Thanksgiving

Thanksgiving is my daughter’s favorite holiday. As a military family, we were rarely able to travel home to spend the day with family, so we recreated our home by inviting other military families and soldiers to share our table. These friends became what we lovingly refer to as our Army family. They are by far the best byproduct of my husband’s 26-year Army career and the number one reason my daughter relishes Thanksgiving.

Thanksgiving looked a little different for us this year. Instead of a table for 25, we enjoyed a prime rib dinner for three. We will enjoy turkey together on another day. As with the rest of the world, our Thanksgiving tradition is just one of many things that has been impacted by COVID. While COVID has been hard on everyone, it comes with extra challenges for my daughter. 

For those who may not know my story, my daughter has a rare, chronic, progressive brain disease, moyamoya (MM). It causes narrowing of the arteries in her brain which chokes off necessary blood supply. Symptoms can include strokes, transient ischemic attacks (TIAs), seizures, headaches, tremors, movement disorders, anxiety, depression, cognitive issues and fatigue. In and of itself, her disease does not make her more prone to catch COVID, but it does place her at higher risk for complications. Because she has developed secondary impacts to her adrenal glands and thyroid from her MM, her risk for complication is further magnified. Just prior to the pandemic, she caught the stomach flu and ended up hospitalized for four days. 

What has the pandemic looked like for my daughter and many other chronically ill Americans? 

Hypervigilance around masking, social distancing and hygiene. Strict protocols and limitations around all in-person interactions including trips to stores, pharmacies and doctor’s offices. She and those who love her have to remain in constant risk evaluation mode. Is X social distancing or are they posting pictures on social media that show otherwise? Does Y advocate for wearing masks or do they bemoan them? Is a trip to the store necessary? Can anyone else go? Are people wearing masks walking into the store? How many people are inside the store? Can I manage my symptoms virtually from home? Do I need to delay my annual MRI/MRA to check for progression? Should I delay testing my cortisol levels? Can we afford the risk of sending my son to school in person? 

Increased anxiety around medical supply chain disruptions. As a patient with adrenal insufficiency, she does not produce cortisol, a hormone that is necessary to survive. Without her daily replacement medication, hydrocortisone, her body will eventually go into an adrenal crisis, the number one cause of death in adrenal insufficient patients. Hydrocortisone is used to treat inflammation, autoimmune diseases and other medical conditions in addition to adrenal insufficiency. With the onset of COVID, one supplier stopped producing the medication creating a shortage in the marketplace. This placed her and many other patients in harm’s way while the pharmacies sorted out how to prioritize the medication for those who needed it critically. The realization that her life depended on the ability to get a medication in short supply was sobering. 

To complicate matters, as people delayed non-urgent medical appointments, prescription demand slowed. Pharmacies stopped placing daily medication orders. Shippers started reducing staff, and shipments started taking longer to get to pharmacies. Insurance regulations, however, did not change. You are only allowed to fill prescriptions within a certain window of when your prescription ends. Pharmacies will not order before the insurance approves the medication. This has led to multiple instances of gaps between one prescription ending and the refill arriving. 

Neurofatigue took on new meaning when it came to having to parent 24/7 without the breaks that in-person school provided. Stepping into the role of teacher’s assistant has escalated the problem. Her exhaustion levels are extreme. Cognitively, it is amplifying memory and processing challenges. Her neurologist decided to prescribe home health care support, but after conferring with her neuroendocrine doctor, became more concerned about the risk of bringing the virus into her home. Ultimately, he has added an additional medication used by patients with MS to combat neurofatigue. 

These are just a few of her daily challenges. By far the hardest thing she has had to deal with during this pandemic are her feelings about the people who do not believe COVID presents a problem. Those who deny the need to wear masks; who argue against social distancing measures; who point to 98 percent survivability statistics to justify their views;  who argue that a two percent death rate is an acceptable loss, so they can continue to feel normal. It is hard not to see herself in those comments as the sacrificial lamb to another person’s comfort. 

I believe in my heart that if people put faces to the numbers, these arguments would die a quick death. I am asking you to please read the virtual booklet below. It was created by two moyamoya patients and their families to raise awareness by sharing patient stories. Each of these individuals is at higher risk for complications. Each of these patients deserves our protection. 

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.flipsnack.com%2Ffacesofmoyamoyadisease%2Ffaces-of-moyamoya-disease%2Ffull-view.html%3Ffbclid%3DIwAR2slU7G8Z2OeT5ouoElLP8F1scW_ZUrFozPnJ3KFFICRttgsyOh3xESHBQ&h=AT0SYHTHSUV86-P18cFf9ILpBhkoiVVIucBLja9U5Lh3L49ChAuCRIsowuBguA5DHKFo9ZUsrVZzenogjexrIJSOSdP-2FhVj6agS4_cb8C75C6YEVx4QXp1ORXPA7DirQ&__tn__=-UK-R&c[0]=AT02LQG5lnUAu62wT4WZ1oo9m-E-a9nSrz4ET5XAPrOF6F1kTY71IA0STSqHZwbaaUakZApgBIyL-Qaihxortoc4oq99RUONdN_qjvdzULi3KTJTs-F_bzX-TU-8eGVRZdhvD-hwROd34_g7RWKLbUUuEGw 

Giving up my big Thanksgiving this year was hard. Wearing a mask sucks. Not being able to visit regularly with friends and family pisses me off. I am tired of social distancing, but I know it would be far worse to live with my guilt should a choice I made result in a forever consequence for someone else.

The day after - a call to reconcile

I voted.

I am a fiscal conservative who is socially liberal. I believe in a strong military defense, but I expect Congress to be judicious in sending soldiers into harm’s way. I believe there is a fine line between necessary public safety legislation and government overregulation. I do not fit neatly under any political party’s platform. I have voted Republican and Democratic and found myself drawn to the occasional Libertarian. I am a swing voter

For through the Spirit we eagerly await by faith the righteousness for which we hope. For in Christ Jesus neither circumcision nor uncircumcision has any value. The only thing that counts is faith expressing itself through love. Galatians 5:5-6

The lead-up to this election has been the most divisive in my lifetime. Life and death issues have caused people to take sides. Disinformation has fueled partisan divide. People cast their votes this election to act on what they view as moral imperatives—racism, abortion, capital punishment, women’s rights, gay rights, immigration. Others were  driven to vote based on their view of how to protect their loved ones in the world –  people who believe access to guns is critical to self-defense and reducing violence, and others who believe that easy access to guns fuels crime and violence; people who believe a strong defense deters wars and others who believe a strong defense encourages wars; people who believe expanding social security programs enables dependence and others who believe expanding social security programs is foundational to independence; people who believe the government has a responsibility to ensure affordable medical care for all Americans; people who believe government interference in the medical system will dilute medical care and limit access.

We hope to see our votes shape the world we want to see.

Accept the one whose faith is weak, without quarreling over disputable matters.  One person’s faith allows them to eat anything, but another, whose faith is weak, eats only vegetables. The one who eats everything must not treat with contempt the one who does not, and the one who does not eat everything must not judge the one who does, for God has accepted them. Who are you to judge someone else’s servant? Romans 14: 2-4 

We will soon learn if our individual votes delivered our presidential candidate. Inevitably, some are going to be disappointed, dismayed and discouraged. Some will look to those who voted differently and think, “How could they?” Some will be drawn to anger, frustration and judgment; others to finger pointing, name calling and further division. Most will feel righteous in their response, but Jesus did not cloak us in judgment; he robed us in grace.  

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! All this is from God, who reconciled us to himself through Christ and gave us the ministry of reconciliation: that God was reconciling the world to himself in Christ, not counting people’s sins against them. And he has committed to us the message of reconciliation. 2 Corinthians 5:17-19 

On May 10, 1994, Nelson Mandela invited his white jailer to attend his inauguration as an honored guest. He understood that to heal his country from the wounds of apartheid, he first had to reconcile his country. Regardless of which candidate takes office in January, individually we can all make a difference in healing our country. Jesus called us to forgiveness, not revenge. He understood it is only through reconciliation that people’s choices are made clear.

The Gathering Table

This is how everyone will recognize you are my disciples – when they see the love you have for each other. John 13: 34-35

October 12 was Thanksgiving in Canada. Next month we celebrate Thanksgiving in the United States, the following month, Christmas. As a military family, we have moved seventeen times, lived in eight states and one foreign country. We spent the majority of holidays away from family, but we rarely spent our holidays alone. Our table was filled by neighbors, soldiers who had no place to go, army friends who became family, and friends of our children who would finish their family meals and then join us for a second helping. Our door was and is always open, our table always full. 

Our guests have spanned various ages, nationalities, religions, sexual orientations and political parties. They included soldiers, business owners, housewives, students, government workers, teachers, pastors, artists, bankers, retail workers and entertainers. Over the years, we have developed a diverse and broad set of friends. 

When Facebook first hit the scene, it was ideal for connecting with out-of-town friends and family. My “friend” group grew rapidly as I found friends I had lost touch with from high school, old neighbors, past coworkers and extended family. The ability to share pictures, chat, post videos and comment on each other’s posts in real time allowed us to connect in a way that letters were simply unable to. 

As Facebook’s popularity took off and they exponentially expanded their user group, the “virtual neighborhood” became a hunting ground for data scientists, marketing specialists and campaign managers. The flavor of conversations changed. Politics took hold. With the filter of in-person conversation lifted, the Facebook debate was born. Suddenly virtual connection was not as enticing as it once was. 

Today I have a love/hate relationship with Facebook. Having a daughter with a rare disease, this platform has enabled unprecedented access to other families around the world who are dealing with this same disease, an emotional support network and an easy avenue to raise awareness for my daughter’s moyamoya disease. As a writer, it has provided me with a medium to share my work with a large group of people. In the midst of a pandemic and an election year, however, Facebook has been feeding disinformation, conspiracy theories, politicization, divisiveness and separation. It has become a window into a side of people, I have at times wished I could unsee. 

 For it is not an enemy who taunts me— then I could bear it; it is not an adversary who deals insolently with me— then I could hide from him. But it is you, a man, my equal, my companion, my familiar friend. Psalm 55:12-14

In a world consumed by a pandemic, politics and social media grandstanding, it is far easier to find a justification for anger than love, but we are called to do better. Social media is not real life. Real life is the kindness we show each other when our worlds are falling apart. It is the conversations we hold over a meal with a glass of wine. It is the favors we trade; the work we share and the fun we engage in. It is arguing and making up. It is forgiving and being forgiven. Real life is the sum of our engagements with each other, not the summary view of each other’s social media page. 

When the pandemic ends, we will be looking to gather again. This year has left many of us questioning our friendships, our family, our gathering tables. Social media is not real life. We should not allow a funhouse carnival view from our Facebook feed to empty our tables.

People like me

People like you. May you reap what you sow.

A “friend of a friend” responded to me on Facebook in a way that has become all too familiar across social media platforms. Instead of dialoguing on the merits of their own viewpoint, they pivot to a personal attack.

People like me...

I am a Christian.

I am the granddaughter of an Army combat engineer who served his country for more than four decades, including two World Wars and the Korean War. I am the daughter of a career Army Infantry officer who deployed twice to Vietnam and once to Iran. I am the spouse of an Army Signal officer who spent multiple tours in combat zones defending our country after a plane barely missed his office in the 9/11 Pentagon attack.  I am the mom of two daughters and the “gigi” of four grandchildren. I am a cybersecurity professional who has made a career supporting the Department of Defense in protecting our country’s networks. My family has sacrificed much defending another person’s right to be ugly to me on social media.

I have lived in eight states and one foreign country. I have traveled to another 23 states and five countries. This has exposed me to a multitude of people from a variety of backgrounds and shaped my tolerance for political viewpoints that do not align with my own. I have seen firsthand that my problems are not the same as my neighbors’ problems. I try and understand that their needs and drivers can be very different from my own. I believe diversity in people and opinion should inspire us, not divide us. 

I have voted Republican and Democratic. I have spoken for and against the current president, as I have for our previous presidents. I stand by my principles, not by a political party. 

I am a person who seeks to spread harmony in this world, but I am finding it harder and harder to do so against a backdrop of an injustice that cries out for revolutionary change. I have seen disparity in how my black friends are treated in our world compared to my white friends. I have seen the harm caused to them by unchecked racism. I cannot turn a blind eye to injustice to keep the peace, but I  will not foster further division by repaying hatred with hatred. 

As a Christian, I am called to love my neighbor as myself. Even if that neighbor and I are very different; even if that neighbor is unkind to me; even if that neighbor sows hatred.

I hope someday to reap what I sow—understanding, grace, love, equality and peace.

A lesson from Vietnam

My dad served in the Vietnam War. It was not a “popular” war. Many Americans believed we fought for the wrong side. Our military was ill-prepared for guerilla warfare, which resulted in high rates of injuries and death. Drafts were necessary to fill the ranks, but coerced soldiers did not make committed soldiers. Long deployments, resentful soldiers, and brutal conditions led to lack of discipline. This environment became an accelerant for angry men. Brutal attacks on civilians stained the entire military. When my dad returned home, despite his honorable service, his uniform was met with scorn, derision, and disrespect. These combined experiences fueled years of heavy drinking. It took two rounds of rehab, before he was able to conquer his demons and overcome the damage from that painful period in his life.

My husband served in the war on terrorism. He deployed twice – once to Afghanistan and once to Iraq. He returned home from these deployments carrying the weight of battlefield experiences we still do not discuss. While most Americans supported the initial foray into Afghanistan, the move into Iraq was less popular. As casualties rose, calls against the war increased. Despite rising disapproval, my husband returned from his deployments to praise, parties, and overwhelming gratitude. Strangers regularly walked up to him in the street to shake his hand and thank him for his service. Businesses offered discounts and free services as a token of their appreciation. Sometime between Vietnam and the war on terrorism, our country learned to separate the soldier from the system waging war. My husband did not have to carry the added weight of a disapproving nation.

We are in desperate need of bringing this same understanding to the men and women who comprise our police force. Our anger and dissatisfaction with the criminal justice system’s militarization of our police force is justified. Our demands for change must continue, but we need to save our condemnation for the policemen who earned it and point our anger and demands towards the system that created and enabled these men to do harm.  

It’s here we feel the depth of your sacrifice.  And here we see a piece of our larger American story.  Our Founders -- in their genius -- gave us a task.  They set out to make a more perfect union.  And so it falls to every generation to carry on that work.  To keep moving forward.  To overcome a sometimes-painful past.  To keep striving for our ideals.

And one of the most painful chapters in our history was Vietnam -- most particularly, how we treated our troops who served there.  You were often blamed for a war you didn’t start, when you should have been commended for serving your country with valor. You were sometimes blamed for misdeeds of a few, when the honorable service of the many should have been praised.  You came home and sometimes were denigrated, when you should have been celebrated. (President Obama, May 28, 2012)

We cannot ignore the horrible atrocities we have seen committed against Black men and women at the hands of policemen. We owe their victims justice and systemic change. But we also cannot turn a blind eye to the many policemen and women who show heroism, valor, and a selfless disregard for their own personal safety. These men and women deserve recognition. They deserve gratitude. Vietnam taught us what happens when we choose a principle over people. The war on terrorism taught us we can choose people and principle. We do not have to choose between disavowing the institution and the people doing right within that institution. We can defend policemen and women and still push for police reform.  We can support the Black Lives Matter movement and still support the men and women in blue.

Let us learn from our mistakes; let us keep moving forward; let us strive for our ideals but let us stop doing it at the expense of good people. Inequity cannot be righted by contributing to further inequity. 

The Scarlet Letter

The scarlet letter was her passport into regions where other women dared not tread. Shame, Despair, Solitude! These had been her teachers—stern and wild ones—and they had made her strong but taught her much amiss.  – Nathaniel Hawthorne

I published my first blog, A Skinny Girl’s Quest to Get Healthy, in 2010. It was a way to create a community of accountability partners and motivate myself to work out. I like writing. I do not like to exercise. Starting my blog worked incredibly well to kickstart my first long-term journey to get healthy. A few years later, when my work location moved from a five-minute to an hour-long commute, I found it challenging to maintain a regular exercise schedule, and I began to falter. When my daughter was diagnosed with moyamoya disease four years ago, my efforts at working out stopped altogether. In those rare moments I had to myself, I found myself on the couch watching Lifetime Movies and researching the next doctor, the next medical treatment, the next hope. I had no time or energy for exercise. Self-care went out the window.

I lost my father almost a year ago. He became a lesson for what happens when we do not place a value on exercise in our lives. It began with a knee injury. He went from walking several miles a day to inactivity. By the time he was diagnosed with cancer, he had lost most of his strength and was only able to walk short distances. Inactivity prior to his diagnosis left him with few physical reserves. He moved quickly from walking slowly to a wheelchair, from being independent to dependent. His last year was spent confined to a lazy boy recliner. By the time he passed, I knew I had to start moving again. I knew I had to prioritize my own health. But recognizing what I ought to do and doing it were two different things. It took eight months, a pandemic, and an accountability partner to motivate me to do the right thing.

Life presents us with these types of situations. We know what we ought/need to do, but doing it is hard, uncomfortable, or has potential for pain. A friend cites black advantage; instead of leaning into the conversation, we change the subject. The politician we support is crossing ethical and moral lines; instead of demanding accountability, we keep silent. Our minister is preaching that love is not love; instead of walking out, we stay seated.

Some days we are better at meeting these moments. Some days we avoid these moments and some days we fail miserably at our response to them. In a world where our lives are on 24-hour display across social media feeds, however, these failed moments can define us.

Recently a video went viral of a woman in Central Park who was asked to leash her dog by a black man. Instead of respecting the request, she argued with the man and then called the police. That five-minute failure has forever branded the woman with the scarlet letter “R.” She has been publicly shamed, had her dog taken away by the group she adopted it from, lost her job, and has most recently been charged with false reporting. Even the victim has said he is unwilling to participate in her prosecution.

Social media has fostered an environment where we feel compelled to quickly brand each other right or wrong, deserving, or undeserving, good or bad, racist or anti-racist, Trumper or anti-Trumper, one of us or one of them. We shame, we point, we “righteously” expose. But shame and accusation rarely serve to change a person’s point of view or make the world a better place.

Will our viral condemnation move this woman’s heart from hate to love? Will this societal reaction deter future racist behavior? Perhaps... Or perhaps our “righteous response” will push her and others further into the corner of hate. 

You, therefore, have no excuse, you who pass judgment on someone else, for at whatever point you judge another, you are condemning yourself, because you who pass judgment do the same things. Romans 2:1 NIV

It is easy to sit on our pedestals and think, I would never... But we all fall on a spectrum between good, bad, and human. EVERYONE fails at some point in their lifetime. When failure finds us, we can only pray that we have someone standing on the opposite side of that moment offering accountability, respect, and dignity, not just a mob of angry people building an insurmountable wall of shame.

Jesus has shown us that everyone deserves grace.