A Father’s Love and Hope

I'm a private person and have never had crews in our home. It's always been a safe space. Yet, I must believe that if James knew his story could help families and children with special needs, he'd be on board without hesitation. James was a very quiet baby; he didn’t coo or make sounds at all. I thought I had a laid-back child who wouldn't keep me up at night. He cried when upset, but otherwise, he was adapting to sound and language far differently than expected.

At first, I didn’t realize anything was wrong. He wasn't meeting typical developmental milestones like sitting up or crawling, and it became clear something was amiss. When James was about a year and a half old, he was diagnosed with cerebral palsy due to certain symptoms. However, this was a common misdiagnosis since it shared many characteristics with other conditions. A pediatric neurologist later observed James’ frequent laughter—a characteristic of Angelman syndrome—and suggested a genetic test. The results confirmed the diagnosis.

Receiving a diagnosis is a pivotal moment for any child with developmental delays. It provides clarity, direction, and a community of support. I recall asking about James's life expectancy and potential pain. The doctor reassured me that his life expectancy was like ours, though he would deal with seizures. Thankfully, James hasn’t had a seizure in over a decade.

I’ll never forget James’ first steps, just before his fourth birthday. Deborah, who has been part of James' life for 18 years, encouraged him to walk towards me. Seeing the determination on his face and witnessing those six steps was magical and overwhelming. It was an incredible milestone, especially since many parents are told their children may never walk.

A typical day with James involves playing ball, swimming, or watching movies. He loves In-N-Out burgers and enjoys adventures with his caregiver, Damon, who has been a blessing. This arrangement allows me to work while ensuring James has the autonomy to enjoy his life fully. James is a happy, well-adjusted young man.

I'm incredibly proud of both my sons. They’re truly remarkable, and while we have our disagreements, they're genuinely good people. James, in particular, works harder than I ever have to overcome his challenges. His perseverance has taught me to appreciate the marvel of human resilience.

My sobriety is another aspect of my life I'm grateful for. Everything is magnified when you have a child with special needs. I got sober around the time James was two, knowing I needed to be present for him.

For years, I've wanted to create more opportunities for families with special needs children to receive the support they deserve, from education to social inclusion. Though I've been fortunate, finding adequate support for James has been challenging, especially as he approaches adulthood. At 21, many of the support systems in place fall away, leaving families to navigate a complex landscape alone.

As James enters this new chapter, I'm concerned about his future. I hope to ensure he has a safe and connected life even when I'm no longer around. With the foundation we're establishing, I aim to create residential options and a sense of community for young adults like James. Inspired by Paul Newman’s Hole in the Wall Gang camp, I dream of creating a space where families can relax and bond while their children engage in enriching activities.

Ultimately, it’s all for James. the goal is to ensure he and others like him live fulfilling lives where they feel they belong. let me know how much is your father’s love and comment in the comment section to see your suggestions and point of view . peace ✌️