I am not sure if you remember me. I met you in the pediatric intensive care unit (PICU) while my child was on life support. You weren’t my child’s primary caretaker that week, you were just a doctor who happened to be on the floor the night we learned his diagnosis. I remember you hadn’t been a doctor for very long, but you seemed really nice.
We spent a decent amount of time outside in the hall. You drew me a diagram of what the brain looked like and indicated on the drawing which parts of the brain were impacted. In many ways, that evening you were a doctor and our teacher about what the new diagnosis meant. I remember you being so nice — and then I blocked something out. It didn’t even come back until my husband reminded me a few months ago. In the rawness of the diagnosis, I didn’t know what his disease meant for his future. You looked at me and said, “He will live, but he will never be Einstein.”
(Photo: Katie Paulson)
The rest of that night is a blur. In fact, the past three years of my journey through motherhood have felt like a movie in fast forward. We run from one clinic to the next and rack up doctors and therapists the way many households rack up credit card debt. We are in a sea of medical language, equipment, medication and therapy terms. Our life since that day has never been the same.
However, one thing stayed with me the entire time. I have carried fear with me all these years. The day you said that, you made me fear he would never be capable. You made me fear that I was going to fail him as a mother. I feared appointments with doctors and therapists where they would measure his abilities against his peers. I felt anger, frustration and resentment towards you for putting the thought in my brain that he might not live up to his fullest potential.
You said he’d never be a Rhodes Scholar and he may never make it to college. Those words went through me like a knife. In that moment, you stole my dreams of his possibilities, and for the past three years I have sat here in fear of the future. Then, this fall, something changed in my son. He started getting services and therapy to help him with his sensory processing disorder and speech delays. For the three years prior we were told he was cognitively delayed and would likely have intellectual disabilities. I was sure he knew more than he could express but needed help.
One day, his speech opened up. He started speaking full sentences. At age 3, Von knew his colors, he could visually recognize numbers up to 10, he was able to identify shapes, he knew the words for every vehicle in a construction site, and he was able to tell me every animal in our book of animals. He was 3, and he knew as much as some children in kindergarten. We watched him start trying to jump, hop and climb. Then it hit me: No one can tell me what my son’s future holds. He will decide whether or not he will be the next Einstein. It certainly isn’t you who gets to make that determination.
(Photo: Katie Paulson)
You were right though, because Von doesn’t learn the same way, and he has learning disabilities. We have taken steps to assist him in all those areas, and through therapy and sensory integration he’s learning how to cope with the overwhelming stimuli in his world. Through this therapy, he’s better able to show us all the things he knows. His memory is long, and his brain is like a sponge. We tell him the name of something one time, and he knows it instantly. He does have trouble with social interaction, but we will work with him on this as we continue in therapy. Social interaction isn’t easy for many people. There are adults who function well in society and still struggle with having a social life. This doesn’t make them less intelligent than others.
For three years I held onto the words “Rhodes Scholar.” I don’t know why they stuck in my head, but I want you to know something. My child being a Rhodes Scholar was never my dream. Maybe that day you were projecting your own dreams and goals onto my family, but I know I have only ever wanted my son to be happy, have stable health and to find things in this world to love and to be loved. While we have met challenges with the stable health, my son is the happiest little boy I’ve ever met. He’s had more love in his three years of life than some experience in a lifetime. Every person who meets him falls in love with him. As a mother, I mark my success not by what he will achieve academically, but by who he will become as a person.
I’m telling you today, I don’t care if he’s not Einstein. He’s not Einstein because his name is Von. He’s happy, smiley, laid back and incredibly smart. He fights harder to reach milestones, and he appreciates everything that is given to him. I appreciate that you helped us with the initial diagnosis. I just want to let you know I don’t care if my son won’t be Einstein. Von is uniquely Von, and I only want him to be Von. He is going to be the person he was supposed to be, and I’m not setting any limits on what he will become. You don’t get to determine his future. Only Von will make that determination. I’m not going to hang onto your words any longer about what his future will be. Einstein has nothing on my son. I have a feeling Von will make his own mark on the world. I can’t wait for you to see.
Katie (Von’s grateful mom)
(Top Photo: Getty Images)