A day in the life of my moyamoya warrior

There is much to love about May. My oldest daughter came into the world on May 6. My grandson was born on May 14. My dad, my little brother, my nephew, my cousin, my best friend’s husband and my daughter from another mother all came into the world in May. There is much to love about the month of May.

Four years ago, in May, we marked the beginning of a different type of remembrance. On May 11, 2016, my youngest daughter was diagnosed with moyamoya disease, a rare, progressive, incurable cerebrovascular disease that can ultimately lead to strokes. She had her first brain surgery May 27, 2016. We came to learn that May is recognized as Stroke Awareness Month, and in a strange twist of fate, May 6, her sister’s birthday, is recognized as Moyamoya Disease Awareness Day. Four years ago, there was not as much to love about the month of May.

If I am honest, as much as I look forward to the birthday celebrations of those people whom I hold most dear, the month of May remains bittersweet for me. Sweet—that I am blessed to have my daughter in my life to share in those celebrations. Bitter—fully understanding that her life has been indelibly changed by this disease.  For all the appreciation I feel for my daughter’s life today, I am still a Mom. As a Mom, I would erase every hardship. I would eradicate this disease from her life if I only had that power.

But the power to eradicate this disease lies with others in our medical community. One group of specialists has already risen to this challenge—the neurosurgical community that has researched and developed lifesaving surgical interventions to provide alternative routes of blood flow to brains that are dying slowly from a lack of blood supply.

The challenge, however, is that outside of the neurosurgical community, the remainder of the medical community has little to no exposure to this disease. Moyamoya is considered “rare” across the neurological community, but it is virtually unheard of across the remainder of the medical community. The brain is the organ that controls messaging to the rest of the body. When the brain is injured, the rest of the body can feel that impact in some other way. Neurosurgeons do surgeries. Neurosurgeons are not meant to manage lifelong chronic diseases that impact other systems within the body. This leaves a tremendous gap in care for moyamoya patients and is a primary driver for my ongoing efforts to raise awareness.  

As we approach my daughter’s fourth anniversary of her diagnosis and our third year supporting moyamoya awareness activities, I decided the best way to spread awareness this month was to share a day in my daughter’s life. Four years later, she has found her way back to a new normal. It is not the normal we imagined in our earliest days after diagnosis, but it is a life that still manages to bring her joy despite her physical challenges. It is a life we are incredibly grateful for.

A day in the life of my moyamoya warrior

My daughter awakens on an average day around seven AM. Mornings are not easy for her, because sleep is not easy for her. She wakes after most nights still feeling tired. On good days, she can rise, take her blood pressure (laying and standing) and take her morning medications, before she starts the rest of her day. On more challenging days, she needs her husband to bring her medications to her and take time for them to start to work before she can start moving. On bad days, the act of rising from her bed triggers a transient ischemic attack (TIA). On those days, she typically will have to spend the rest of the day in bed or on the couch.

On a good day, she will check her calendar to see what activities need to be done that day. Her calendar has become the bible that helps her stay on track. After two strokes and two brain surgeries, she has both short and long-term memory deficits. Working with occupational therapists, she has developed a system that relies on notes in her calendar and alarms on her Apple Watch to ensure that she meets her tasks each day. She has alarms set to remind her to take her medicines; alarms set to remind her of all family appointments; alarms set to remind her to eat; alarms set to remind her to take and pick her son up from school; alarms set to remind her to pick up laundry, get gas, get groceries. These tools have proven invaluable in helping her stay on track.

The calendar provides a dual purpose. Not only does it work as a visual reminder of her day. It allows her to look ahead to plan out her day physically. She does this to ensure that she does not burn out early in the day which could force her to miss a more important event later in the day. If she has multiple big events in a day, she often needs to pick and choose, knowing that her body will only cooperate for so long.

Overstimulation to her brain in the form of crowds, activities that require intense concentration, or high stress activities both good and bad, are important factors in her calculations. These types of activities can trigger headaches and brain fatigue, which also translate to downtime. Her life has become a study in balancing her wants with her abilities. Some days she manages that balance better than others. A miscalculation can result in multiple days of forced down time. Over time we have come to understand that there are times she needs to choose joy and emotional wellbeing over physical well-being. She may pay for her choices physically, but those choices bring the intangibles that still make life worth living.

On a good day, she takes her son to school (which right now means she is teaching him, too), plays with her son and helps with his homework; she walks and feeds the dog; she does laundry; she helps pick up around the house; she does arts and craft activities; she volunteers at her son’s school; she does the dishes until somewhere between 4 and 5 in the afternoon.

Late afternoon is her witching hour. It is rare she has energy left at the end of the day to cook a meal, to play a game, to get her son in his pajamas. Some evenings it is even hard for her to hold a conversation. Evening is not her friend. On the days her calendar shows an important evening event, she has learned it is wisest to leave the rest of her calendar empty. That does not guarantee she will physically make it through a dinner with friends, a date night with her husband or a family dinner gathering, but filling her calendar almost definitely assures she will not be able to make it.

On a challenging day, she puts her energy into only those things needed to care for her son. Her husband remains the rock who steps in where she leaves off. On a bad day, she has a village of loved ones (myself, her dad, her sister and in-laws) who also jump in to lend a hand. She struggles with unnecessary guilt for needing additional help. The guilt of not doing enough or being enough for friends and family has often been the impetus for making decisions to push forward on activities that ultimately set her back.

There was also a time when it was far harder for her to see the blessings in her life. As she struggled through a long period of continual bad days, it was understandably hard for her to view her life through any other lens than loss. Four years in, while I know her heart still longs for so much more, she has worked her way into a rhythm that has allowed her to move from anger to acceptance and from grief to wellbeing. Her good, challenging and bad days are evening out. Four years in, she has found her way back to a new sense of “normal.”