Embracing Anger

 “You shall not take vengeance or bear a grudge against the sons of your own people.” Leviticus 19:18 

 

My dad was an alcoholic. He came close to drinking himself to death in his forties, but God intervened and gave him the strength he needed to battle his disease. By the time he finally passed away from liver cancer, he had been sober for more than forty years. 

 

My mother went to college at fifteen, married my dad at seventeen, had my brother at nineteen and me at twenty. She returned to college when I was in fourth grade to earn a degree, fearing my dad’s drinking would cost him their livelihood. I don’t remember a time when my parents were happy together, but I have letters that reassure me I was born from love. 

 

As a military officer, my dad was gone as much as he was home. When he was home, he was detached. By the time I was in middle school, his drinking became so severe, he was hospitalized. He was told if he continued drinking, it would cost him his life. He fell off the wagon, within the first year. 

 

Alcohol and anger did not mix well together. My brother and I would build forts in our closets to avoid the sound of my parents’ arguments. I was better at tuning the noise out than my brother was. Still as I moved into adulthood, my childhood desire to find peace in my own life drove me to help others find peace in their lives.

 

This trait served me well in my personal and business relationships. I have been able to deftly navigate conflict, but there is a fine line between peacemaking and appeasement. Appeasement has been a blind spot. I have chosen other people’s comfort over my own to keep the peace. 

 

“Learn to do right; seek justice. Defend the oppressed. Take up the cause of the fatherless; plead the case of the widow.” Isaiah 1:17 

 

As a Christian, I learned to suppress my anger, confusing its appearance as a harbinger of sin, rather than a herald of injustice. In my fervor to avoid vengeance, I abdicated responsibility for neighbors who needed defense. 

 

“…and whatever other command there may be, are summed up in this one command: ‘Love your neighbor as yourself.’” Romans 13:9

 

My parents taught me anger is the death to love. Religious leaders taught me anger was the opposition to love. Studying Jesus taught me the difference between righteous anger and vengeance IS love. Life is teaching me anger harnessed by love can be a powerful agent for change. I am turning sixty this year and learning to embrace my anger. 

God Always Shows Up

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

When your daughter is facing her third brain surgery in seven years, this can be a challenging verse to live up to. There are days the weight of my unanswered prayer feels impossible to carry, much less carry with a smile. Anxiety builds and the smallest thing can trigger a spiral of doubt and cascading fear. 

Still, every day, I see God moving in our lives. Opening a door that seemed closed, clearing a path that was blocked, nudging me forward with a text, and sending me direction when I clear the noise and stop to listen.  

I do not always display the faith of the Shunammite woman who confidently stated,  “All is well,” on the heels of her son’s perceived death, but my faith remains unshaken. God does not always show up the way I want or expect, but he always shows up. He shelters me on my darkest days, pushes me on me weakest days and forgives me on my worst days. 

God always shows up. 

Broken Trust: A Stanford Research Patient's Point of View

Last month, my daughter and I learned that the President of Stanford resigned as the result of an investigation that found there was data manipulation occurring as part of research studies in his lab and other labs under his purview. 

 

“Many praised Dr. Tessier-Lavigne’s intellectual acuity and commitment to scientific rigor, but many also described a lab culture that incentivized good results and successful experiments. They felt that the lab, and Dr. Tessier-Lavigne, ’tended to reward the ‘winners’ (that is, postdocs who could generate favorable results) and marginalize or diminish the ’losers’ (that is, postdocs who were unable or struggled to generate such data),’ the report noted.

 

“The committee determined that Dr. Tessier-Lavigne did not desire this dynamic, but that it may have contributed to the high rate of data manipulation that came out of his labs.”

 

https://www.nytimes.com/2023/07/19/science/tessier-lavigne-resignation-research.html (https://www.nytimes.com/2023/07/19/science/tessier-lavigne-resignation-research.html)

 

My daughter has been receiving care from Stanford since December 2016 for a rare disease, moyamoya. Over the past seven years, she has received the best and worst the institution has to offer. 

 

She received a lifesaving brain surgery, the laparoscopic pedicled omental bypass in 2016 after a failed surgery at another institution. My daughter might not be here today without the surgery. She also experienced a post-surgical hardware infection that was dismissed by her surgeon for six years. It spread throughout her bypass. Six years later she is in palliative care. 

 

My daughter is part of a research study that looked at the efficacy and safety of this surgery. The study details the rate of complications and long-term surgical results for twenty-one patients over a ten-year period from 2012 to 2022. President Tessiere-Lavigne did not coauthor my daughter’s study, but he presided over the researchers who authored her study for the duration of her treatment. 

 

I discovered the published study online in February. I was surprised and disconcerted to find major discrepancies in the report. The report omitted a large granuloma that developed in her bypass. This was a major complication for which she was hospitalized multiple times. She had surgery at Stanford to remove the growth in 2018. 

 

The study also reports that she did not experience post-surgical TIAs. My daughter was treated by Stanford with medication to raise her blood pressure at least two times over a two-year period, because she continued to experience breakthrough TIAs. These are two of six discrepancies that I noted. 

 

I notified the leadership at Stanford (CEO of Stanford Healthcare, Dean of Medicine at Stanford University, and Chief of Neurosurgery) of the discrepancies in early February. I asked that the study be updated to accurately report her information. I also requested they form an objective team to reach back to all omental bypass patients and evaluate if their patient information was presented accurately. They partially corrected the study on July 25, 2023, one week after the story broke about the President. 

Stanford had a prime opportunity to demonstrate a recommitment to research accuracy and patient care but instead made a decision NOT to update the study to include mention of the most serious complication, a chronic post-surgical infection. 

 

My daughter and I have made a conscious effort over the last seven years not to second guess our medical choices. Since this article broke, we cannot stop second guessing the last seven years. 

 

Would her surgeon have debated the diagnosis of infection as hard and as long if there were not a negative consequence to acknowledging it? 

 

Would he have removed all of her hardware in 2017 as the Georgetown infectious disease specialist recommended? 

 

Would he have been as quick to dismiss the positive cultures for bacteria in 2017 as transfer? 

 

Would she have been treated with long term IV antibiotics sooner?

 

Would she have been able to clear the infection before it spread to an area that antibiotics can’t treat? 

 

What could her life have looked like the last six years without the presence of an infection? 

 

Would she be a palliative care patient if she had not been part of a research group? 

 

The “what ifs” are haunting us, but what haunts us more is the conclusion that was made in the study. The study concludes that the surgery is safe and effective. If the data that has been used to support that conclusion is incomplete and inaccurate, can the conclusion be trusted? 

 

Stanford is a leading contributor for moyamoya research. Patients make decisions based on their studies. Doctors make decisions based on their studies. When one study is flawed, it raises questions about other studies. When multiple studies are flawed, it raises questions about the entire body of research. 

 

My heart is heavy thinking about what this could mean for the moyamoya community and other disease groups that depend on their medical research. Sound research will be tainted by flawed research. 

 

Patient trust has been broken. 

Corrigendum to: “Ten-Year Experience With Laparoscopic Pedicled Omental Flap for Cerebral Revascularization in Patients With Moyamoya Disease” J Pediatr Surg 57 (2022) 710–715 - Journal of Pediatric Surgery (jpedsurg.org)

 

Faith, Hope and Unanswered Prayers

 

“I wait for the LORD; my whole being waits, and in his word I put my hope.” Psalm 130:5

 

Hope. 

 

I have a complicated relationship with this word. 

 

Hope is where my faith began. 

 

I hoped to make sense of this world and find meaning in the things that did not make sense. 

 

Faith is where my peace began. 

 

As I grew in my faith, I came to care less about making sense of the world and found purpose in making meaning out of things that did not make sense. 

 

Hope is also where my hurt began.

 

Answered prayers laid a strong foundation for my faith, but unanswered prayers are where grief found a home. 

 

When my daughter was diagnosed with a rare brain disease in 2016, I prayed for her to survive brain surgery; we were gifted with her life.  

 

After surgery, I prayed her life would return to normal; within a few months, we learned her surgery had failed. 

 

I prayed for her to survive when she had her second brain surgery; again, we were gifted with her life. 

 

After her surgery, I prayed for her life to return to normal. Within a week she was hospitalized with a post-surgical infection. Six years, fourteen hospitalizations and four additional surgeries later, she is unable to clear the original infection. She entered palliative care last summer after suppressive antibiotic therapy started to fail. 

 

Since then, I have been praying for time. We have been gifted with ten months and hope to be gifted with many more.  The last ten months have been some of her most challenging both physically and emotionally. There are days I feel selfish for hoping. 

 

At some point I stopped praying for healing. I know that God will heal her. Instead, I pray fervently for healing to happen on this side of heaven. 

 

I have a complicated relationship with hope; my faith remains unshaken.

A Son’s Love Story: A World Moyamoya Day Celebration

Last fall, I picked up my grandson from school, because my daughter was not feeling well. When he got in the car, he told me that he had won several prizes for raising the most money in his class for a pediatric heart fundraiser that his school was sponsoring. He was happy about the prizes, but his excitement was overshadowed by his worry for the children who were pictured on his fundraising papers.

His mom had been diagnosed with a rare brain disease when he was a toddler. Since her diagnosis in 2016, she has had five surgeries and been hospitalized seventeen times. He traveled with her to Florida and California for brain surgeries. Nurses have been providing home health care services to his mother off and on since he was two. His mom is not able to do all the same things other moms do. He has fears about most things medical. He has fears about his mom. The idea of kids his age being sick left him feeling anxious.

I told him how proud I was of him for raising so much money. I explained the money he raised would help researchers discover new treatments to help the children in the pictures feel better. I then went on to tell him that I had recently helped launch a non-profit for people who had the same disease as his mom. I told him we were hoping to raise money for research to find a cure for his mommy’s disease. He was quiet for a minute and then announced that he was going to talk to his teacher about doing something at his school to raise money for his mom’s disease.

I dropped him off that afternoon and didn’t think much more about the conversation. Unbeknownst to my daughter and I, my grandson went to school the next day and told his teacher about our conversation. He then proceeded to ask her regularly about setting up a fundraising event for moyamoya. His teacher did not dismiss his request. She researched moyamoya disease and told him they would plan a special event in May for his mom, because moyamoya awareness day was on May 6. Every time they turned the calendar to a new month, my grandson would ask her how many more months until May.

On April 28, his mom received a note from his teacher letting my daughter know that Chris had been planning a special World Moyamoya Day event. She asked if would reach out to me and see if I would come to the classroom to tell his classmates about moyamoya disease and share information about how his classmates could donate to the non-profit I was working with, World Moyamoya Alliance.

I cleared my schedule for the day of the event, ordered red and blue awareness bracelets, blue cupcakes and printed out a stack of information sheets that talked about the disease and gave information about our non-profit’s first official fundraiser. My daughter, son-in-law and I arrived and were met by a classroom full of children dressed in blue. Chris and his teacher were wearing matching awareness t-shirts that she had ordered as a special surprise. The room was decorated with butterflies, a symbol of hope, transformation and moyamoya awareness. She even bought butterfly topped bubble favors for the entire class. 

I gave a short presentation that prompted a lot of questions. Is moyamoya contagious? How do you treat it? Why do you have to drink water? What causes a stroke? How many people get moyamoya? Did brain surgery hurt? Do you have seizures? What are seizures? We feasted on goldfish, cupcakes and ice cream cups and ended the day with a bubble blowing ceremony outside.

My grandson was beaming ear to ear. My daughter and I were struggling to hold back tears of appreciation. After six years of sitting ringside to his mom’s hardships, this event had given him the opportunity to do something about them.

A very special thank you to his teacher, Mrs. Davis, who could have easily said “No,” but instead took the time to research, plan and create a special event to help a little boy help his mom. If you would like to help him too, please consider making a $56 donation (or whatever you can spare) to the World Moyamoya Alliance in honor of May 6^th, World Moyamoya Day. #togetherwecan make a difference for moyamoya patients and families across the world.

DONATE | World Moyamoya Alliance

Finding Prosperity in a Storm

 

This is what the Lord says: As I have brought all this great calamity on this people, so I will give them all the prosperity I have promised them.

 

Jeremiah 32:42

 

We recently bought a walker that converts into a wheelchair for my daughter. While she is not at a point where she needs to use it every day, she is having a difficult time walking long distances. On bad days, she has been forced to miss out, because she has been physically unable to get around reliably. The walker gives her the freedom and confidence to join in activities regardless of how she is feeling.

 

The first day she needed to use it was to help her manage several long walks from parking lots to fields to watch her son and nephews play in their first sports games of the season. My husband and I met her for her son’s baseball game. It was the third game of the day. We were tired; she was exhausted. We found her sitting alone at the top of the parking lot struggling to hold back her tears. Fatigue, grief and frustration had overwhelmed her as she sat with such a visible reminder of the things she had lost. 

 

At 32 years old, she has had more than her share of calamity: a rare disease diagnosis at the age of 25, a failed bypass surgery to her brain, adrenal and thyroid failure, and a post-surgical complication that left her with a chronic infection. Seeing past the calamity in my daughter’s life to the prosperity in her life can be challenging on her best days. Keeping my anger at her situation from clouding my certainty that God has only her best interests at heart has been a day-to-day faith struggle.

 

As I held my daughter in my arms that day while she railed against all that was happening to her body, I felt my anger winning. Eventually she settled down and we made our way to her son’s field. It was a hot day. Excessive heat can be challenging for my daughter on a good day; when she already is depleted, it can trigger a transient ischemic attack (mini stroke). We were three innings into a six-inning game at the hour and 30-minute mark. My grandson son had stolen his way to a home run on his first time at bat. He struck out for his second at bat. His team was down by one run. My daughter was struggling to sit up and stay awake. It was clear physically that she needed to leave, but she refused to let us take her home. She did not want to miss his first game.

 

I could not imagine that she could last another hour and half in the heat. As I fretted about the situation, her son’s team made a home run tying the game. The next batter stepped up to the plate, and I felt a few sprinkles. A few minutes later, the skies opened and a thunderclap ended the game early. My grandson came running out of the dugout with a big smile on his face heading straight for the concession stand. My daughter was smiling, grateful she had been able to make it through his first game of the season. My heart lifted; my anger shifted. A short time later the storm clouds cleared to a magnificent rainbow. 

 

On a day where I was struggling to reconcile a loving God “bringing” pain, it was not lost on me that prosperity showed up in the shape of a storm. 

A Tough Journey

Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.

My daughter started palliative care a little over a week ago. Palliative care is not hospice, but there is recognition that comes with that action—that life is precarious.

It has been a tough month. It has been a tough year. It has been a tough journey. I did not understand six years ago how my daughter’s life would be changed by the utterance of two words, moyamoya disease. I did not understand how my life would be changed.

There are days when my faith burns bright and nights when it is a mere flicker, vulnerable to the next strong gust.

On my worst days, it is hard to rise, put on a face and hold back from raging at the world, raging at God for her suffering. There are days I want to toss my faith in the garbage can, because it feels easier to live with the belief there is no God than accept the idea that God is allowing her pain.

On my best days, I only see God’s gifts. She received a diagnosis. Too many patients are left wondering and hopeless searching for answers. She has been given the means to afford travel to top specialists across the country. Too many patients are left untreated because they have no insurance or have the wrong insurance. She was gifted a son, before she became physically unable to have children. She has been gifted a husband who is unflinching in his support. She has been gifted with a sister who makes her laugh on her most difficult days. She has been gifted with in-laws who pour out their love, time and energy to make her life easier on a daily basis. She has been gifted with friends who are family she is able to turn to with her hopes and her fears. She has been blessed by six more years of life.

In between my best and my worst days, I remind myself, I have been blessed with a life, not promised an easy life. I have been gifted a husband, family and friends who make my life easier. I have been gifted with Knowledge; knowledge there is a God who, despite my faithlessness, is faithful to me; knowledge there is a God who has sacrificed his own child to assure my child’s everlasting life; knowledge there is a God who loves my daughter infinitely more than me; knowledge God has a plan for my child’s life.

And still there are days where the weight of my daughter’s hardship crushes my soul and I can only groan.