This was written by my first born, Ashley, who we call Tash or Tasher. You can see I’m a very lucky momma. I think her words give insight to the dynamics in play in a family when one sibling has disabilities, and the powerful influence the experience has had on her life and vocation.
I love my role as a critical care nurse. I thrive on balancing the demand for sharp skills and quick thinking with remaining calm and supportive for my patients and their families. The ICU is a loud, disturbing place and the work is exhausting. However, I can rest easy at night knowing I buffered the environment a little for my clients and did my best to move them closer to being out of the ICU.
Nursing comes naturally to me. I am the oldest of three girls and my middle sister, Amanda, was born with multiple disabilities. She is deaf, has brain damage, and autism. I grew up amid diagnoses, medications, and various therapies. My mother desperately tried to juggle managing Amanda’s care while still providing as ‘normal’ a childhood for my youngest sister and me. I still, to this day, do not know how she did it all.
When I was young, my world was black and white and my thinking concrete. Despite being a usually easy-going child, I became fiercely protective of my sister if someone stared while out in public. I put my small body in front of her cumbersome wheelchair and gave them a look back that dared them to continue gawking.
I was the classic responsible eldest child, never wanting to make waves. As I grew older, I had an internal war of emotions raging. I loved my family, yet parts of me were beginning to resent the care my sister required. I often wanted to scream, “She’s not my child! No one asked me if I wanted this. She’s not my problem!” I fought these emotions and the guilt they induced through my childhood.
In late adolescence, my relationship with my mother began to move from solely mother-child towards a friendship. As our interactions teetered in this grey space, I began to see a woman exhausted, frustrated, and, at times, overwhelmed. My eyes were opened and for the first time, I saw her grieve her own personal losses, not just Amanda’s misfortune. I wanted to reach out to her as my friend, but the residual child in me was resisting. My mother was my rock, always seeming to have every answer. But I also found relief in my mother’s vulnerability, as it gave me permission to relinquish my self-induced perfectionism.
These days, I see the effects of the chronic fatigue and sleep deprivation as it catches up with my mother’s body. We brainstorm about the future and how we will care for Amanda, knowing full-well one day it will be my and Meghan’s name on her guardianship papers.
I go home to Austin as often as possible to participate in events in Amanda’s life. Recently, a simple examination of her ears and eyes was necessary. Despite its simplicity, the only option was to put her under general anesthesia. The actual procedure, which took under an hour, required weeks of planning and coordination on my mother’s part. This is how Amanda’s healthcare has become as she has entered adolescence and adulthood.
As most children increase in cognitive awareness, visits to the doctor become easier. Amanda, however, understands just enough to be terrified. She requires a healthcare team that thinks in terms of pediatrics, but understands adult physiology. My mother remembers the names of individuals who displayed the utmost kindness by listening, thinking creatively, and doing their best to accommodate Amanda.
Recently, I was on the phone with my mother after another frustrating doctor’s office visit. The neurologist ended up seeing my sister in his boardroom as she refused to enter an exam room. After laughing in hindsight at the humor of the situation, my mother said with a hint of exasperation, “Ashley, can you develop a place where Amanda can go to the doctor without it being such an ordeal?” I replied, in jest, “Sure. I’m on it.” Yet, something in me wondered, ‘Why not?’ I began wondering— how do you take someone’s blood pressure when the individual will not let you near him or her? How do you get someone in an exam room when necessary medical equipment terrifies them? Is it even possible?
Unfortunately, my mother is not the only one with these struggles. There is a growing community of parents and families of adult individuals with multiple disabilities, especially those with behavioral difficulties, who battle daily for the best for their loved ones. Why must providing for one of their most basic needs – the integrity of their health—be one of those battles?
As foretold in nursing school, I wear many hats as a nurse. My favorite role, though, is advocate. The small girl with the fierce eyes still lives inside me somewhere, but I am learning to channel her passion into more constructive measures. It is this innate loyalty to be a voice for the voiceless ones that drives me to find a way to serve their healthcare needs more effectively.
Perhaps one day, there will be a clinic where Amanda and those like her will enter willingly, understanding that though they may not like everything that occurs there, it is still a safe place. The burden their caregivers carry lightened a bit, shouldered by a community that says, “We know. We understand.”
Teach me to hear that story,
through each person,
to cradle a sense of wonder in their life,
to honor the hard-earned wisdom of their sufferings,
to waken their joy that the King of all kings stoops down to wash their feet,
and looking up into their face says,
‘I know– I understand.’
— A prayer, author unknown