When my son, Caleb was initially diagnosed with cardio-facio-cutaneous syndrome (CFC syndrome for short), I felt like my world began to spin out of control. Before the diagnosis, I had a general idea about his future. I expected Caleb to go to school, graduate and then go to college and get a degree. I expected him to get a job and live on his own. I hoped he would settle down, get married, and give me grandkids – one of whom would obviously be named after me if she’s a girl.
Naturally, those were my ideas. What he became was up to him. But after the diagnosis, I had no idea what to expect. Caleb’s future was a mystery, one I felt I needed to solve. However, having a rare genetic disorder only brought ambiguity. No one had any definitive answers, only guesses.
It was like going on a trip where the destination was unknown. How do you plan for that kind of vacation? What do you pack? How much do you pack? Not knowing where you’re going makes it hard to plan. It’s an unsettling, overwhelming and intimidating feeling. To keep those feelings at bay, I held the reigns tighter.
I researched as much as I could about Caleb’s syndrome. I made sure to familiarize myself with the correct medical jargon so I could talk to doctors and therapists. Everything and anything I could do to bring some order to the unknown, I did.
But despite everything, I still felt out of my element. I felt like an imposter, saying and doing everything right on the outside but doubting everything on the inside. It would’ve been nice to have someone who has been raising a child with a disability come alongside me and tell me what I now know.
In over two decades of raising Caleb, I’ve come to realize, I still don’t know what I’m doing and it’s okay. There’s going to be a lot of trial and error. Some plans will work and others won’t. Celebrate the victories and dust off the failures. Unknowns are a part of life.
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