Having Samuel for One More Day
A commonly heard idea among parents who have lost their children is that they would give anything to just have their child again for one more day. As Samuel’s cognition continues to rapidly decline, we have come to terms with the fact that we are going to outlive Samuel, and our entire focus in life right now is to enjoy the time we have with him as much as possible, recognizing that each day may be the last. I always tell people that there is a duality to Samuel. When he isn’t having seizures, he is energetic, loves to run around and be chased, and he loves to dance and sing to music. When Samuel is having lots of seizures, he becomes docile, often just wanting to sit and look at books, and all that energy is gone. Often, when he is having his seizures, it feels like I’ve lost my son. Throughout the years, we have never been able to get a clear understanding of what is causing him to lapse into hundreds of seizures a day versus when he is seizure free. Years ago, he woul