What They Don’t Tell You

After Bennett was diagnosed with a rare, neurodevelopmental disorder called CDKL5 Deficiency Disorder at 11 months old, I was told that the future was unknown for him, that he would “write his own story.” That was the most positive thing we heard. Then we were given some websites to visit and we read about the statistics for a child like Bennett and it was grim, to say the least. The neurologist and the geneticist chose their words carefully, careful not to be too devastating and careful not to be too positive, in case we were to become disillusioned about our son’s condition. We were also told to call our regional center to seek an assessment and services as soon as possible. What they didn’t tell us was how we were in for the fight of our lives… for services, for medical equipment, for the best care possible for our child.
The fight for services… the fight for medical coverage…the fight for the safest and most effective anti-epileptic meds… the fight for medical equipment…the fight for therapies…the fight for the best placement in the school districts. Every day that I am not working, I am making phone calls and emails to case workers, therapists, doctors, specialists, or advocates whom I have questions for. In between that, we are at therapy and doctor’s appointments, or completing our home therapy programs for physical therapy, speech, occupational therapy, early intervention, vision, and feeding and oral motor development.
What they don’t tell you is that taking care of  a child with a severe disability and medical needs is a full-time job.
They also didn’t tell us that Bennett would make even the grumpiest stranger smile. That his pure, sweet innocence would make anyone’s day better. That a cuddle or giggle from Bennett would feel like sunshine on my heart. They didn’t tell us that Bennett would lead to living a life that I never knew I wanted and to experience feelings that I never thought I would understand. They didn’t mention that Bennett would be a true gift and enrich our lives in every way possible… teaching us empathy, advocacy, and unconditional love.They didn’t tell us that Bennett would be our angel and we would do ANYTHING to make his life the fullest, happiest life possible.


  1. Beautifully written and completely on the mark. Our boy Troy is the love of my life that I never knew I needed until he landed in my arms. I tell people that I never EVER would have chosen this life but now I wouldn't change a single thing. God is GOOD.


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