As told by Libby Keller, Aspire of WNY Board Member and Mom to Sebastian with narrative introduction by Megan Rechin, Vice President of Communications & Growth Opportunities at Aspire of WNY

For those of us moving through the world with ease, it’s easy to overlook how seamlessly environments, homes, and tools cater to our abilities. Even when life presents its challenges, it’s built for us. However, for individuals with disabilities, the landscape is profoundly different.

Recently, I visited the home of Libby Keller, an Aspire of WNY board member and mother to two sons, one of whom, Sebastian, receives services from our agency. The reason for the visit? I had asked Libby to share her story to help us understand their lives, journeys, and challenges.

It was twilight on an icy winter evening when I showed up to meet Sebastian. When Libby opened the door to their home, the warmth enveloped me. Libby greeted me with a radiant smile, her eyes reflecting the soft glow of the kitchen lamps. “Sebastian’s just finished his evening routine,” she said, and she welcomed me into their home.

Sebastian was dressed in his casual, evening best and hanging out with his friend and Direct Support Professional, Lucy, who has been a constant in their lives for nearly 12 years—a level of consistency rarely afforded to families of children with disabilities.

“Come, let me show you Sebastian’s room,” Libby said. To get there, she rode with him to the second floor on a small, unassuming elevator —a lifeline in this two-story home, one of the indicators of a life more complex than most of us realize.

Sebastian’s room was a sanctuary, carefully designed for his needs. A specialized bed and a collection of sensory toys showcased a mother who has created an environment to welcome her son. In every space, Libby spoke of the continuous strength, both physical and mental, required to care for her son. Then, in the bathroom, equipped with a lift for the tub, spoke of the constant, meticulous planning required for every aspect of Sebastian’s care.

As we walked, Libby’s love for Sebastian was palpable. “This is our world,” she said, her voice a mix of tenderness and quiet determination. “Every modification and every piece of equipment is all for him.”

I could see the weariness through the smile on her face, a testament to the relentless demands of caring for Sebastian. “When I was expecting him,” she began, her voice echoing the story I knew, “I dreamed of first words and first steps, like any mother.”

Libby reflected on those early times, saying, “When Sebastian was several months old, the milestones of rolling over and sitting up, which we take for granted in an infant, never came.” After many doctors’ appointments, diagnostic testing, and physical evaluations, it was determined that Sebastian sustained a perinatal brain injury that would prevent him from reaching development milestones at the typical age, if reaching them at all. Eventually, Libby explained, he was diagnosed with spastic quadriplegic cerebral palsy, vision impairment, epilepsy, and intellectual disabilities.

At approximately 6 months of age, Sebastian was enrolled in Early Intervention and spent much of his day working with physical, occupational, speech, and vision therapists. This was not how Libby expected motherhood to go.

“It was terrifying, mainly because his developmental prognosis was so bleak. Many of my friends had children at this time, and the incessant chatter about all the amazing things that young children do and how quickly they grow and change was, at times, unbearable. I felt like I was on an island, all alone with my son, where time stood still; feeding, bathing, carrying, and diapering were constant, even as his body grew longer and heavier. No one could relate to the challenges we faced.”

Her words painted a vivid picture of those early days, the crushing weight of a bleak prognosis, and the isolation of a journey few understood. “Aspire,” she continued, “Aspire was my lifeline. Suddenly, I wasn’t alone.”

Her story flowed, the familiar narrative of Early Intervention, the Center for Learning, and the after-school respite program. Each program is a pillar of support, enabling her to work, to breathe, and to simply be a mother.

“He loves school,” she said, a genuine smile lighting her face. “The bus ride, the teachers, the outings… it’s his world.”

She continued, elaborating on how Aspire of WNY has helped her gain comfort in Sebastian’s care. “Aspire gave me the assurance that Sebastian would be fine and would grow and learn to the best of his abilities, even if those abilities were well behind those of his peers. Sebastian is now fourteen years old and currently attends Aspire’s school-age program at their Center for Learning, and he loves going to school. I don’t know another kid who gets as excited as he does when the bus arrives. Knowing that he is being cared for and in such good hands, with teachers, therapists, aides, and other support staff, is a huge relief as a parent. It means I can go to work without worrying about who will take care of my son.”

Sebastian also attends the after-school respite program at Aspire of WNY. Libby explained, “This has been a massive help as he has two full-time working parents. Without these programs that provide care for children with disabilities, I would not be able to continue working in my current job.”

But beneath the gratitude, a shadow of worry lingered. “He’s fourteen now,” she said, her eyes filled with the unspoken fears of a mother. “What happens when he’s twenty-two? What will his life be like then?”

The questions hung in the air, heavy and unanswered. The future, a vast, uncertain landscape, stretched out before them, filled with potential obstacles. Libby’s role as an Aspire of WNY board member gave her a glimpse of possibilities, but the fear of the unknown was a constant companion.

“I’m thirty-five years older than him,” she said. “His father is thirty-nine years his senior. We won’t always be here.”

The weight of her words settled upon me. The wheelchair van, the Hoyer lifts (specialized patient lifts for transport and mobility), the elevator – these weren’t just accommodations; they were symbols of a life lived against the odds. Libby’s dedication was unwavering, but the system Sebastian will have to navigate without her was a looming, terrifying prospect.

“I just want him to have a full life filled with dignity, respect, and love,” she said. Aspire of WNY provides him with that now, and I will continue to work hard so that they can continue to do so in the future.

As I left Libby’s warm, brightly lit home, the winter wind seemed to carry her words, a plea for understanding, a call for awareness. The snow continued to fall, blanketing the world in a silent, white embrace. But beneath the surface, a mother’s love, a child’s resilience, and the unwavering support of Aspire of WNY, an agency dedicated to the futures of children like Sebastian.

Libby shared her story with us to help advocate for the importance of supporting children and adults with disabilities, as well as agencies whose mission is to ensure they are able to fulfill their full potential. She drafted her story in her own words, which is available, unedited, below. We hope that you are as inspired by their story as we are. Children like Sebastian and parents like Libby are examples of why we do what we do every single day. We are grateful that she has allowed us to share her story.

From the Desk of Libby Keller:
A Mother’s Story

When I was expecting my first child, I couldn’t wait to meet him. I wondered what his first word would be, when he would take his first steps, whether he would play a musical instrument, what he would be when he grew up, and so on. These are all the thoughts first-time parents obsess over as they await the arrival of their newborn. When my first child, a son named Sebastian, arrived in August 2010, I still had thoughts of wonder and anticipation about when he would reach the assumed milestones and what his interests would be.

 However, when he was several months old, the milestones of rolling over and sitting up, which we take for granted in infants, never materialized. After many doctors’ appointments, diagnostic testing, and physical evaluations, it was determined that Sebastian sustained a perinatal brain injury that would prevent him from reaching development milestones at the typical age, if reaching them at all. Eventually, he was diagnosed with spastic quadriplegic cerebral palsy, vision impairment, epilepsy and intellectual disabilities.

So, at around 6 months of age, Sebastian was enrolled in Early Intervention and spent much of his day working with physical, occupational, speech, and vision therapists. This was not how I expected motherhood to go, and it was terrifying, mainly because his developmental prognosis was so bleak. Many of my friends were having children at this time, and the incessant chatter about all the amazing things that young children do and how quickly they grow and change was, at times, unbearable. I felt like I was on an island, all alone with my son, where time stood still; feeding, bathing, carrying, and diapering were constant, even as his body grew longer and heavier. No one could really relate to the challenges we faced.

But then Aspire of WNY entered our lives. Sebastian was accepted into their center-based classroom at the Center for Learning, attending three mornings a week and receiving most of his therapy services at the school. It was the first time I didn’t feel alone on this journey with him. Other classmates with similar disabilities and staff truly understood what his needs and his parents’ needs were. This was the support I had been looking for. Aspire assured me that Sebastian would be fine and would grow and learn to the best of his abilities, even if those abilities were well behind those of his peers. Sebastian is now fourteen years old and currently attends Aspire’s school-age program at their Center for Learning, and he loves going to school. I don’t know another kid who gets as excited as he does when the bus arrives. Knowing that he is being cared for and in such good hands, with teachers, therapists, aides, and other support staff, is a huge relief as a parent. It means I can go to work without worrying about who will take care of my son. Sebastian also attends the after-school respite program at Aspire. This has been a massive help as he has two full-time working parents. Without these programs that provide care for children with disabilities, I would not be able to continue working in my current job.

This is why it is so vital that agencies like Aspire exist; Sebastian’s needs go beyond what can be supported at his public high school. Aspire’s Center for Learning has the capabilities and experience to help children like Sebastian, providing a safe environment where he can learn through adaptive technology and access equipment he would otherwise not have. He also has weekly outings with his classmates in the community; these outings could include a trip to Walmart for supplies or a visit to a pumpkin farm. Aspire has the resources to give these children access to the outside world that other schools do not, and for that, I am forever grateful.

I know firsthand how challenging it can be for a non-ambulatory teenager to perform simple tasks, such as going to the grocery store. Try pushing a grocery cart while also pushing a fourteen-year-old in a wheelchair simultaneously. Not an easy task. It means being able to purchase only what you can carry in one hand or relying on outside help, such as a direct service provider (DSP), to care for your child so you can attend to these errands. Our family has been fortunate to have had the same DSP for Sebastian for almost 12 years. She has been a lifeline for our family, picking up Sebastian from after-school respite and being home for him when he takes the bus a couple of times a week. And she is willing to drive our wheelchair van, which is something I never thought I would have to have as a parent. However, a lot of what I thought being a mom would be like changed dramatically with Sebastian. Wheelchair vans, Hoyer lifts, ramps for entering the home, and bath lifts. These are some of the adaptive equipment that are now a part of everyday living for us.

I used to see wheelchair vans with the Aspire name and logo driving around town and never gave it much thought. I just thought it was a company that transported people with disabilities. Now, Aspire is paramount in many facets of our lives, and their name is constantly in my thoughts. Although Sebastian is only fourteen and still in school, he will likely rely on others for his basic self-care needs throughout his life. He will never be able to be left alone, feed himself, take a walk, communicate with words, dress himself, use the toilet, bathe, and do all the other things we take for granted. His journey and his family’s journey have a long way to go, and the future is scary. When he ages out of school at twenty-two, what will he do? Will he have to live at home for the rest of his life? Will his father or I have to stop working to take care of him? What about his younger brother? Will he be prevented from pursuing his dreams so he can instead help care for Sebastian? I fear the unknown more than anything; it’s what keeps me up at night. I am thirty-five years older than Sebastian; his father is thirty-nine years old. He does not have any medical issues that would exclude him from living an expected lifespan. As a board member of Aspire, I’ve had the opportunity to visit one of their day habilitation sites and several of the group homes. It gives me hope that he may someday have a safe place to live and access a supportive program. Aspire offers a range of services to individuals with diverse disabilities. Like me before I had Sebastian, I had no idea how vital agencies like Aspire are to our community. It allows people like Sebastian, who may be limited in their abilities due to no fault of their own, to live a whole life with dignity, respect, and love.

Sebastian has never spoken his first word, taken his first steps alone, participated in team sports, or played a musical instrument. However, he communicates through vocalizations in a way those close to him understand; he uses a gait trainer at school for exercise; he participates in adaptive skiing in the winter and floats in a pool in the summer. His experiences are entirely different from most kids his age, but they are his experiences, and he finds great joy in them. And I will do whatever it takes to make sure he is cared for as he gets older. However, I will depend on agencies like Aspire for much of that care, as I cannot do it alone, and there will come a day when I can no longer do it at all. I need to know that he will be cared for with compassion, and I am confident that Aspire can provide that for him. I hope the community realizes this as well and gives Aspire the support it needs to continue caring for individuals like Sebastian throughout their life journey. He may not be able to contribute to society as most people are expected to, but you won’t find a more infectious laugh than his. The reward of seeing his joy for life is priceless.