A Journey of Strength, Love, and Advocacy: The Williams Family Story

IN THE QUIET SUBURBS of Warren, Michigan, the Williams family embraced the challenges and triumphs of raising their two-yearold son, Kaladin. Kaitlyn, Jonathon, and little Kaladin embarked on a journey filled with advocacy, milestones, and the unwavering support of their community.

Kaladin’s story began in the neonatal intensive care unit (NICU), where the Williams family faced their first major hurdle. Born with Hydrocephalus, a condition requiring immediate brain surgery, Kaladin spent his early days navigating the complexities of medical intervention.

As Kaitlyn reflected on those initial struggles, she emphasized the crucial role advocacy played in their journey.

“He needed brain surgery at just 4 days old to place a shunt. His shunt surgery went great, but he was in the NICU for two and a half weeks due to lack of weight gain and feeding difficulties,” Kaitlyn explained. The NICU’s strict feeding schedule posed challenges, and Kaladin’s parents had to adapt to ensure his well-being.

Rather than succumbing to the rigid schedule, Kaitlyn and Jonathon recognized Kaladin’s needs and advocated for his release. “We knew we needed to get him home as soon as possible to feed him more frequently and get his weight up,” Kaitlyn stated. They proposed a plan to the medical team, suggesting they learn to use the NG tube for feeding at home. This proactive approach not only expedited Kaladin’s discharge but also empowered the Williams family to take an active role in their son’s care.

The NICU experience set the tone for the family’s commitment to advocating for Kaladin’s needs. Once home, the couple navigated a complex web of therapies and services, ranging from physical and occupational therapy to speech therapy and vision specialist guidance. Every day, Kaladin engaged in these sessions, laying the foundation for his development.

“We are very lucky that he is able to receive these services from so many different organizations. We go to outpatient Beaumont, Early On through the Macomb Intermediate School District, and New Heights Speech and Language,” Kaitlyn shared, highlighting the collaborative effort involved in Kaladin’s care.

Amidst the medical journey, Luna, the family’s Chiweenie puppy, emerged as an unexpected source of support. Initially expressing jealousy, Luna eventually became a comforting presence for Kaladin. “Kaladin struggles with gross motor skills, but it’s so cool watching him pet her. I wouldn’t be surprised if it’s actually helping him!” Kaitlyn exclaimed.

As the family continued to adapt to their new normal, they found solace in familiar traditions and activities. The Detroit Zoo became a favorite, providing a space for joyous family outings. “We love the zoo! We’ve gone to the Detroit Zoo’s yearly Zoo Boo (Halloween) and Wild Lights (Christmas). We’ll bring Kaladin’s wagon, and his Firefly GoTo seat fits perfectly in it!” Kaitlyn shared, underscoring the importance of inclusivity in family traditions.

Despite the daily challenges, the Williams family maintained a positive outlook, celebrating each of Kaladin’s milestones. “Every milestone is super exciting! We have no expectations, just celebrations. We celebrate what he can do now and work hard to keep getting stronger,” Kaitlyn expressed.

One significant milestone involved Kaladin’s successful trial with an Augmentative and Alternative Communication (AAC) device from Tobii Dynavox. Facing a severe speech delay, Kaladin found a voice through this technology, marking a pivotal moment in his communication journey. “I’m so excited to see him progress and have a voice!” Kaitlyn exclaimed.

While Kaitlyn and Jonathon faced personal and professional adjustments, they found solace in their respective roles. Jonathon, an IT professional, continued his career while supporting the family’s unique needs. Kaitlyn transitioned from teaching high school English to dedicating herself full-time to Kaladin’s development.

“We don’t really have family leisure time, but Jonathon and I take turns so that we can at least have individual leisure time. In the evenings, we’ll watch movies or TV shows while we take care of Kaladin,” Kaitlyn shared, acknowledging the balance required in their daily lives.

The couple’s involvement in the community extended beyond their immediate challenges. Though community engagement proved challenging, they prioritized giving back, donating toys and formula to Early On and planning future contributions as Kaladin outgrew equipment.

“There is no way Kaladin would be as strong as he is now without all the help we’ve received,” Kaitlyn emphasized, acknowledging the crucial role of various specialists, therapists, and organizations and, of course, the support of family in Kaladin’s progress. From Beaumont to Early On and New Heights Speech and Language, each entity played a vital part in the holistic care Kaladin received.

As Kaitlyn looks toward the future, she highlighted the family’s ongoing quest for answers regarding Kaladin’s digestive issues. “We currently just want to find out what is wrong with his digestive track,” she shared, underlining the continuous pursuit of solutions for their son.

Reflecting on their journey, Kaitlyn offered advice to those facing similar challenges: "Take everything one day at a time. Educate yourself as much as you can so that you can prepare for possible diagnoses, but also so that you can help them become their best." The Williams family's story exemplifies resilience, love, and the transformative power of advocacy, leaving an indelible mark on the community they call home.