Growing Up With a Quadriplegic Mom: A Daughter’s Reflection

From the very beginning, it seemed my life unfolded against a backdrop that defied convention. My mother gave birth to me following a spinal cord injury two years prior that left her a quadriplegic.

I have had the opportunity to become a first-hand witness to not only the boundless love that comes from a mother, but also the unwavering resilience and determination intertwined with an understanding of the extraordinary through having a disabled mom.

In this journal, I not only wish to share the intimate, yet profound, insights I have gained through my childhood, but also to celebrate the love I have been given that transcended the boundaries of physical abilities.

The Early Years

At the age of 17, my mom sustained a traumatic spinal cord injury due to a car accident. The aftermath of this accident not only drastically changed the trajectory of her life, but also mine, though I was not even an imminent thought.

After her injury, she had to navigate not only a new day-to-day life, but also the future – fighting through medical complications, the bureaucracy that follows, and a lengthy legal case to recover as much as possible while finding ways to enhance overall mobility through physical therapy and managing the expenses as well as the uncertainty of life with a spinal cord injury.

At the time of her injury, it wasn’t common for a woman with an SCI to have a child; therefore, the reality that my mom could conceive sparked immediate excitement, but also fear within her. She struggled with feeling like she was not going to be “enough.”

Despite her injury being at a C6 level, which left her with limited mobility in her upper extremities, she determinedly worked through her pregnancy to gain more strength and control of her upper body so she could care for me as independently as possible.

She also courageously embraced complications through pregnancy due to her injury. This is one of the many examples of absolute love and dedication that started even before my arrival.

I witnessed this tenacity to be her best self for me throughout my childhood as she graduated from college, attended therapies and pushed herself into advocacy for the paralysis community.

Unique Challenges

Growing up with a disabled parent comes with unique challenges that together my mom and I have learned to navigate and accept.

Since her injury happened before I was born, I never really questioned or assumed my mom was any different than anyone else's.

This comes as a surprise to most I share this with, but I have never known my mom any differently than she is now. In a way, I am actually grateful for this because it has naturally ingrained an understanding and acceptance of the reality of having a disabled parent.

As I was learning things any typical child would, I was also subconsciously learning how to comprehend the way my mom’s body worked differently than mine or my dad’s and adapting to her.

Whether it was helping her reach something in the kitchen, pushing her around at the mall, assisting her transfer into my passenger seat so I could learn to drive, recognizing when she is experiencing dysreflexia or struggling with maintaining thermoregulation in the Florida heat, these challenges helped me cultivate a sense of resourcefulness within myself.

I strongly believe the challenges that come with having a disabled parent are overwhelmingly outweighed by the triumphs and lessons.

I feel I have been graced with enormous empathy and a desire to always practice inclusivity and mindfulness of others because I was born into that circumstance.

I have also been inspired by my mother’s resilience to overcome adversity and attempted to replicate it during my own challenges.

My childhood experience has also led me to be grateful for the small, ordinary things in life that are sometimes overlooked and also taught me to embrace patience and understanding when approaching tough situations.

“What is it like?”

Since these experiences are so normalized to me I never really think much of my mom’s injury.

In fact, the only time I have ever been forced to reflect on this matter is when I get asked by others, “What is it like to have a mom in a wheelchair?”

This question has been asked repeatedly since I was too young to give a well thought-out response. This question has made me more aware of my “unconventional” childhood than anything I have actually experienced firsthand.

The underwhelming answer many face when asking me this, is that it really is not dramatically apparent to me that my mom is different.

My mother has worked hard to make sure I never felt as if my childhood was incomparable to my peers.

My mom attended every soccer game I played for 13 years, drove me anywhere I wanted to go, cooked for me, picked me up from school and social outings, and found ways to adapt.

Often what people fail to realize is that having a spinal cord injury is not a definition of life for anyone involved, including a child of a parent with an injury.

Advice for Families in Similar Situations

For families facing similar situations, my advice is simple.

One, embrace the uniqueness and find the silver linings. From a direct perspective this can seem like an impossible ask, but this really is an opportunity to learn how to change perspectives and adapt.

Secondly, I encourage establishing a strong support system outside of the family. My mom was my soccer team mom and class grade mom and created connections in my circle to be able to ask for a helping hand when needed.

Lastly, remember you are not alone. The SCI community online is active, strong, and easily accessed. From Facebook groups to podcasts and other resources, a simple online search can connect you with others facing the same things you are. There is strength in sharing experiences and learning from each other.

Moving Forward

As for our mother-daughter dynamic now, I can confidently say that my mom is not only my best friend, but also a motivating force to become the best version of myself despite anything life may throw in my direction.

Now that I am older, I am eager to help make my mom’s life easier and make her just as proud of me as I am of her.

Her continued advocacy for the paralysis community has also fueled my motivation to raise awareness and support the community with my own endeavors.

Although I don’t know if I could ever make up for a fraction of the devotion she has shown me, I will forever be grateful for the way she has raised me and, most importantly, for the unconditional love she shows me to this day.

Her spinal cord injury never defined us, but it has shaped us - hopefully for the better.