Stop Legislating Decisions, Start Enabling Parenthood

 

“We cannot love issues, but we can love people. And the love of people reveals to us the way to deal with issues.” Henry Nouwen

 Should a mother be forced to sacrifice her life for the life of an unborn child? What if that mother has other children? Should she knowingly leave them motherless? Should a mother be forced to carry a child to term knowing that the child’s death is inevitable upon birth? Should a woman have to be forever connected to her rapist through shared parenthood? Should a daughter have to carry the child of her father or brother? Is a child who had sex with a child meant to have a child? Should a mother bring another child into the world knowing she is unable to feed the children she has? Should mothers be forced to carry a child for nine months, grow attached to that child only to have to give the child up, because they can’t afford to feed and clothe their child? 

These are heart wrenching, complex situations that women face daily across our country. The answers to these questions have not been made clearer by the supreme court’s latest ruling.

Politicians have no place in these decisions; the government has no place in these decisions; strangers have no place in these decisions. Christians have only one place in these decisions - Love thy neighbor.

If you are pro-life and committed to stopping abortions, please consider you may have won a battle this week, but you are not winning the war. If you truly want to impact the abortion rate, then stop legislating decisions and start enabling parenthood. Elect leaders who will support universal birth control, fund parent education programs, childcare subsidy programs, early education programs, food assistance programs and continuing education programs. Stop sending your money to politicians and start sending it to organizations that make a difference in a child’s life after birth. Make it easier for women to say “yes” to motherhood and you will do far more than reduce the abortion rate; you will make a difference in children’s lives.

The Pepsi vs. Coke Debate

My husband and I moved to Ft. Hood, Texas, 37 years ago. He was a young lieutenant fresh out of the basic course. I was 20-year-old bride six months into my first year of marriage. 

My first year as an Army wife should have been easy. It wasn’t. I was an Army brat who knew nothing about the Army. My dad had been gone for large segments of my childhood. By the time I was in tenth grade, he had served two overseas tours in Vietnam and one unaccompanied tour in Iran. When he was home, he was distant and struggled with PTSD and alcoholism. It took most of my childhood and two inpatient rehab stints for him to find his way to sobriety through Alcoholics Anonymous. 

My mother went to college at the early age of 15. She married at 17, had my brother at 19 and me at 20. An Army brat herself, she never fully embraced military life. She was too busy raising my brother and me and worrying about my dad’s drinking. She feared his drinking would cost him his job. She went back to school when I was in fourth grade, won an internship with a local news station by the time I was in fifth grade and by sixth grade her career had skyrocketed. She became the first female anchor on a network news station in Orlando. My parents separated during my dad’s second stint in rehab. They eventually divorced when I was in tenth grade. 

The Army was my dad’s employer; it was never a central player in my life. This left me unprepared for Army life. Within weeks of arriving in Texas, my husband deployed to a field exercise for thirty days. One exercise became multiple exercises. He was gone as often as he was home. There were no mobile phones, personal computers or internet to enable communications. Long distance phone calls to friends and families were unaffordable. Military life would have been extremely lonely had it not been for the friends I developed through the battalion wives’ support group, a group of ladies of all ages, races, demographic backgrounds, political and religious beliefs.

My husband’s company commander’s wife took me under her wing and into her heart. To this day she is the sister I never had. We are different in many ways, but the same where it counts. She would do anything for me; I would do anything for her. She leans right of center; I lean left of center. Over the years, we have disagreed on politics as often as we have agreed on them. We have voted the same in elections; we have voted differently in elections. We both voted for the same candidate in the last presidential election. It would not have mattered if we did not. A single vote could not erase 37 years of knowing her heart. 

Early in our friendship, we were ordering drinks in a diner. I asked the waitress for a Coke. She told me they only carried Pepsi products. My response was to ask for something else. My friend ordered a Pepsi. She went on to tell me she preferred Pepsi to Coke because Coke was too sweet. I responded with surprise and said, “No way! Pepsi is sweeter! AND it is too flat.” She argued back saying, “Definitely not. Coke is flatter!” We looked at each other and burst out laughing. That conversation still defines our friendship.  

Over the years, some things have changed; some things have stayed the same. She prefers Coke now. I traded in soda for tea. We are still two people who see the world quite differently at times, but 37 years later we still choose to share our drinks together. Our differences have born a beautiful friendship.   

              

The Sin in this story isn't about Them

There has been an onslaught of new legislation across the country targeting LGBTQ+ rights. Obscured by language about protecting parents' and women’s rights, at the heart of the legislation is a fierce push by religious fundamentalists to reverse the normalization of LGBTQ+ individuals.

I am a 57-year-old, white Christian woman. I first heard the word “gay” used to describe someone as other than happy in fourth grade. The word was being hurled at a classmate on my school bus who was angry and upset. Kids on the bus were giggling, laughing and repeating the word. I knew something was terribly wrong about the way the children were acting, but I did not fully understand the undercurrent of shame that clung to their insult. I did not understand how to comfort my classmate and combat the cruelty. I did not understand that telling my classmate to ignore what was said because it wasn’t true, would not/could not feel comforting. I did not understand that my “good” intentions served only to reinforce a false flag that my classmate had something to feel shame about.

Fifty years ago, society taught me that men were not supposed to sleep with men and women were not supposed to sleep with women. Religious leaders taught me homosexuality was sinful. Since then, I found Jesus. I studied his word. I developed and cultivated my relationship with God. This relationship forever changed my views.

If a man say, I love God, and hateth his brother, he is a liar: for he that loveth not his brother whom he hath seen, how can he love God whom he hath not seen? 1 John 4:20

What I have come to understand is the sin in the LGBTQ+ story does not sit with the lesbian, gay, bisexual, transgender, queer person perfectly designed by God, but in the behavior of the people who bully, ostracize, humiliate, assault, persecute and turn away from them.

The sin in this story isn’t about them.

Fifty years later, the bullies on the bus have grown up. They are clothed in suits and stilettos, carry a bible for the cameras and brandish a powerful pen, but they are still the same kids who used insults to gain favor and taunts to instill fear. Only now they have the power to do more, take more, harm more.

Fifty years ago, I did a terrible job protecting a friend. Fifty years later, I have grown up and am armed with a vote, a voice and my own pen.

If you are concerned or just want to find out more about the latest push of anti-LQBTQ+ legislation, here are a few organizations actively making a difference.  

Get Involved - Human Rights Campaign (hrc.org)

WE SAY GAY – Together Rising

The Trevor Project | For Young LGBTQ Lives

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.

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.