Bennett's Wish

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 servi ces 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 equipmen...

When you find out you’re pregnant for the second time, you are fairly confident that everything will go routinely. You’ve been through this before, you don’t have time to worry about the “what if’s” and you figure that the chances are you’ll have a healthy pregnancy and baby. My pregnancy with Bennett went fairly smoothly, nothing too concerning or  abnormal.  After he was born, he was slightly smaller than we anticipated, but again, nothing too concerning. His first few months he struggled to gain weight, but so did his older brother, so we weren’t too  worried . At about 3 months, I was looking back at pictures of my oldest at that age and realized he was holding his head up and tracking with his eyes better than Bennett was, so I mentioned it to the pediatrician at his check-up. She agreed that he needed to work on head control, so we started physical therapy by 4 months. At our  6-month  check-up, I was growing more concerned because Bennett still wasn’t ...