On this Mother’s Day, I plan to hold my boys just a bit closer. Our journey as a family has taken an unpredictable and extraordinary turn—from me reaching the pinnacle of my profession to navigating life as a disabled mother. Though our relationships remain resilient, they often serve as a stark reminder of how society undervalues parents such as myself.
Following five heartbreaking miscarriages, I eventually embraced my role as a mother to two thriving sons who are now 15 and 17 years old. In their early years, our lives took an unexpected turn when I received a diagnosis of Arnold-Chiari malformation—a serious brain disorder resulting in spinal cord damage. This condition forced me into using a wheelchair and required assistance from caregivers for everyday activities.
Following the onset of significant disabilities and restrictions, an unimaginable scenario unfolded—people started doubting whether I could adequately look after my children. During some of my most difficult times, even those at the school who once praised my parenting abilities began questioning if I was fit for this role. These individuals informed me that should they determine I couldn't parent effectively, I'd have to turn to support services which might try to end my right as their guardian. While regaining essential skills, I simultaneously faced the bone-chilling prospect of potentially losing custody of my boys.
Sadly, my tale isn't an isolated one. While starting a family is seen as a fundamental human right, parents who have disabilities face discrimination that leads to tangible repercussions.
Parents who have disabilities, particularly those involving intellectual or developmental challenges, encounter shockingly high referral rates to Child Protective Services. Even more concerning, up to 80% of caregivers who haveIDDs may be stripped of their parental rights because of presumed shortcomings instead of proof of mistreatment or harm. It’s unjust that numerous mothers must face the burden of proving they deserve to keep their children. This demeaning expectation disproportionately affects individuals with disabilities. Consequently, many decide against having kids due to this constant worry. Being a Black, disabled, Afro Latina woman intensifies these baseless assumptions about my capabilities as a parent.
My own children endured cruel bullying from peers and parents. They have been asked, “How are you able to be a kid?” and told, “You don’t have a real mommy.” I couldn’t participate in activities in their upstairs classrooms or chaperone field trips, and my sons were continually questioned about my absence. They asked me, “How can we tell these people we’re OK?” We brainstormed and created vision boards, which led to writing a book . It gave them a tool to respond to critics and bullies and to share their lives with the world with confidence and joy.
Our experiences became a motivating yet insidious force. Because I had been the parent who primarily handled the day-to-day needs of the boys before I was diagnosed, our situation was seen as a household issue and school officials assumed it was a burden, as the standard of care had changed. To prove my capability as a mother, I had to maintain a facade of recovery before I was ready.
While undergoing rehabilitation, I encountered subtle yet harmful acts of discrimination where straightforward requests for assistance were turned into weapons against me. Sending my sons to stay with relatives during significant surgeries was misconstrued as a sign of weakness rather than an expression of resilience. From early on, people tended to speak directly to my children instead of engaging with me, a common occurrence for individuals with disabilities. Each day, I lived in dread that officials might misinterpret my tremors or memory slips as indications of severe negligence. To keep my kids safe, I instructed them always to remain near me and grasp onto my wheelchair since I dared not let them out of my sight.
Prior to my disability, I was the quintessential "supermom" who handled everything, with my spouse taking on the role of the fun-loving father. The shift in circumstances compelled us to redefine how we approached parenting responsibilities. My partner needed to become more actively involved and acquire essential caregiving skills such as preparing meals and bathing times for our children, along with managing every other aspect. Meanwhile, I welcomed assistance from friends, neighbors, and fellow churchgoers so that I could focus on recovering.
I transformed from a supermom into a more involved and understanding parent. There was no hurry since hurrying was impossible for me. Instead of rushing, I spent time reading and conversing with my kids. We attended therapy sessions and participated in adaptive sports activities together. Prior to regaining my ability to drive a car, I used my wheelchair to take them to school, after which we would stroll and wheel our way back home over the course of a mile.
I cherished each developmental stage, including the temper tantrums and times when I needed to take deep breaths. The frustration gradually turned into awe knowing that my sons were progressing normally. To foster this growth, I set up an educational atmosphere led by their interests, integrating everyday activities and natural experiences as part of the lessons. Additionally, they taught me valuable things too—this process was simplified since my wheelchair kept us at the same height. As such, my physical condition naturally evolved into a strong connection point between us.
I opened myself up to vulnerability and permitted my children to witness my disabilities openly, free from embarrassment. In the past, whenever I experienced a seizure or an episode of nausea, my spouse would shut the door to shield them, leaving my younger child to nervously await outside. Once things were under control, we'd invite him inside. Both boys could choose how deeply they wished to understand what I was going through. The youngest son helped clean my face, while the eldest waited until I felt more comfortable before gently massaging my back. When recovering from brain surgery, I encouraged them to feel my healing stitches. They expressed their understanding by drawing pictures depicting this experience. Initially, I aimed to stay resilient for their sake; however, over time, they turned out to be remarkably supportive figures during challenging times.
Despite living with chronic pain, I remain dedicated to being present for my children—whether by substituting as a teacher at their school or volunteering to assist those in need within our community. Having a supportive home environment truly benefits everyone involved, enhancing not just mine but also my kids' emotional understanding and kindness. Watching them grow emotionally has been incredibly rewarding.
The painful prejudices we’ve faced could have broken us, but instead they became gifts. We went from subjects of harmful gossip to examples of unshakable perseverance whenever our wheelchair-accessible van rolled up at school. My sons learned empathy, advocacy and caregiving, and they became my unwavering support system. Now, as teens, they are advocates who take initiative to clear paths for my wheelchair before I arrive. They proudly introduce me to friends and teachers, saying, “You have to meet my mom!” They taught me to embrace my disability and find strength in our story. Whether it’s through Ms. Wheelchair USA competitions or TV interviews, my kids always say, “Wow, Mommy, we can reach more people now.” My disability became my parenting superpower.
On this Mother’s Day, I am celebrating much more than just motherhood. Though our lives might not follow traditional paths, they are abundantly joyful and interconnected through profound mutual respect. My sons are my greatest supporters, and I will forever remain their number one fan.
Parents who live with disabilities show remarkable resilience; however, they often lack adequate resources and support systems. Many remain isolated due to the fear of being reported or because their disabilities might be used against them unfairly. Therefore, urgent systemic reforms are necessary to assist these parents, protecting them from unjust scrutiny or separation from their families. Our initial approach must focus on providing aid rather than causing harm. Sharing more narratives that depict disability as an ordinary part of familial life will significantly influence societal attitudes.
It's crucial that non-disabled parents convey the importance of inclusivity from the start and demonstrate how to be effective allies. Include individuals with disabilities in social settings by inviting them over to your home. If children inquire about wheelchairs or accessible facilities, like the larger stalls in restrooms, use these moments to teach values such as altruism, accessibility, and understanding. Raising children is challenging enough without adding unnecessary barriers for others. Fulfill your child’s natural sense of wonder through acts of compassion and friendliness—qualities I've strived to exemplify as a parent living with a disability.
I aspire that our family’s journey will make a meaningful impact on individuals with disabilities who are parents or aspiring to become parents. We all have dreams that hold significance, and we should have the opportunity to share in both the common pleasures and challenges of raising children, much like anyone else.
Yvette Pegues, Ed.D., started off her journey as a scientist but later became an advocate following a traumatic brain and spinal cord injury. Currently, she serves as a.disabled DEIAB (diversity, equity, inclusion, access and belonging) leader. engineer, advocate for diversity and TEDx presenter. She serves as both the co-founder and chief diversity officer at Your Invisible Disability Group, along with being a board member for The Arc of the United States. During her free moments, she dedicates herself to over 20 adaptive sports and views physical activities as a means of advocacy.
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