Ryder

Ryder is 11 years old and he’s our hydrocephalus and spina bifida warrior. He was born at 37 weeks and his journey began with challenges from the start. At around 13 weeks pregnant, during the ultrasound when we found out we were having a boy, we learned that he would be born with hydrocephalus and spina bifida. It was overwhelming, first the joy of knowing we were expecting a son, followed by the shock of learning about his health conditions. At first, I felt sad and confused about what the future held for Ryder and our family. Yet, I truly believe that God has a plan for us, and Ryder was meant to be a part of it.

Over the years, Ryder has shown more strength than I could ever imagine. He has faced eight surgeries, including four brain surgeries, and it has not been an easy journey. There have been times when his shunt malfunctioned, and I had to rely on my instincts as a mother to tell the doctors something wasn’t right. Those moments are terrifying as you never want to be right in those situations. However, when I noticed that Ryder was not himself after one surgery, I knew something was wrong. Sure enough, an MRI confirmed it, and they had to operate again the very next day.

As Ryder has grown older, we’ve faced new challenges, particularly with school. Around fourth grade, we began to notice how hydrocephalus impacted his learning. He struggles with memory, problem-solving, and certain academic tasks. To support him, his neurologist even wrote a letter to help his teachers understand why subjects like math and memory can be tough for him. It can be frustrating, but we’ve learned to advocate for Ryder and explain his challenges to others. He’s such a smart kid, and watching him work through these hurdles makes me proud every day.

Ryder has missed school, playdates, and countless moments of carefree childhood due to surgeries and hospital visits. It is incredibly difficult to watch him endure these experiences. All you want is to take the pain away and make things easier for him. But Ryder is resilient. Even though he has developed PTSD related to the word “surgery,” he continues to fight.

Emotionally, Ryder is incredibly strong, but there are rare moments when he’ll cry without any clear reason. He hasn’t faced many social challenges related to his hydrocephalus yet, though I do worry about how other kids might react to the scar on his head or his gag reflex, which is caused by his chiari malformation. For now, Ryder remains the sweetest, most polite child I know. He always puts others before himself and approaches life with a loving attitude.

Despite everything, there are moments of triumph. His grades are improving, and I’ve learned how to support him more effectively with schoolwork. I’m constantly working on my patience, especially when he’s processing new information. I know that as he gets older, he will gain a better understanding of his body and learn to communicate his needs more clearly.

Ryder’s journey has changed me as well. I’ve become a stronger person and parent because of him. I advocate for him, ask questions, and trust my intuition. My advice to other parents facing similar challenges is to never underestimate your intuition. If something doesn’t feel right, don’t hesitate to consult your doctor. Build relationships with your healthcare team and lean on support groups. There are other parents who understand what you’re going through, and their advice and experiences can be so helpful.

Through it all, our faith has been our anchor. I believe that God gave us Ryder because we were meant to embrace this journey together. Our lives are richer because of him, and I wouldn’t change a thing. Ryder’s struggles are our struggles, and we face them as a team. Ryder, we love you so much! Never give up—you’ve already shown us how incredibly strong you are!

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