Big Moves for Better Care
Last updated: September 2023
In 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a beautiful boy, my Ray of Sunshine.
He never cried, slept through the night from the start, and had a laid-back personality I adored. Around the age of 6 months, I stated to notice that he still didn't cry, he was still sleeping through the night, and his laid-back personality wasn't changing. He wasn't interested in the things that most babies his age were.
Around this time, I began to visit the pediatrician more than the grocery store and schedule specialist appointments more than play dates. Throughout all this, I continued to hope that everything would be okay and that the doctor's famous statement, "He's just a happy kid taking his time to hit milestones," was true.
Making a big decision
At a little over a year old, after listening to doctors repeat the same thing over and over again and seeing nothing change when it came to Raymond, I made a big decision.
I packed Raymond and my things and headed back to my home state of New Jersey to find answers, leaving my husband behind in North Carolina until his unit approved his transfer. In the meantime, I would have the support from my family to get me through a very difficult time.
The beginning of a very long road
Raymond and I had months of non-stop evaluations and genetic testing, which drained me emotionally. Having the support of family made the journey easier, but the pain continued to grow.
I wanted to do everything I could for my child, and not having the answers continued to break my heart. I felt lost. Little did I know this was just the beginning of a very long road.
In search of answers for a diagnosis or treatment, I (or someone I care for) have...
Treating symptoms while searching for answers
Despite Raymond's normal genetic panel results, he was immediately diagnosed with epilepsy, failure to thrive, and global developmental delay by our new care team. The team worked hard to find the main diagnosis but couldn't. The specialists were left to treat his symptoms while watching our family hurt.
At the age of 2, Raymond's main diagnosis was still not found, and he was diagnosed with cerebral palsy. As a mother, I knew there was more to his story.
I took the umbrella diagnosis for what it was and continued to work alongside doctors to treat his symptoms and give them suggestions on what we should do next. All while continuing to research what some of the other possibilities could be.
Navigating this journey is a full-time job
Looking back, making this move for Raymond's care was one of the best decisions I have ever made. I am grateful that his care team continues to allow me to educate them as they educate me — the true meaning of teamwork.
Navigating Raymond's medical journey has been and continues to be a full-time job. It has not been easy, but it has been one I have learned to love.
Taking life one day at a time
Our life may not be a typical one, but that's okay. I am honored to be chosen as Raymond's mother because of what it has taught me about life.
Through my son's story, I have met some of the most amazing and inspirational people throughout the world that I never would have met otherwise. Our life may never be the typical one, but that's okay. We will continue to share our story, hoping to inspire others and share what has worked for our family, taking it a day at a time.
How do you feel about your support system?