I am not sure if you remember me. I met you in the Pediatric Intensive Care Unit while my child was on life support. You weren’t my child’s primary care taker that week, you were just the doctor that happened to be on the floor the night we learned our diagnosis. I remember saying 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 via the drawing the parts of the brain that 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.”
The rest of that night is a blur. In fact, the past 3 years of my journey through motherhood has felt like a movie in fast forward. We run from one clinic to the next, and wrack up doctors and therapists the way many households wrack up credit card debt. We are drowning in the 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 good, capable or able to have a life that was worth living. You made me FEAR that I was going to fail him as a mother because his disabilities would be too much to manage. I feared appointments with doctors and therapists as they measured his abilities against his same aged peers. There was anger, frustration, and resentment at 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 Rhode’s Scholar and even said 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 3 years, I have sat here fearing what he will become.
Then this fall something changed and happened in my son. He started getting services and therapy to help him with his sensory processing disorder and speech delays. For the past 3 years prior we were told he was cognitively delayed and likely intellectually disabled. I knew that he knew more than he could express but needed help. Then one day his speech opened up. He started speaking full sentences. Von demonstrated that at age 3 he knew his colors, he could visually recognize numbers up to 10, he was able to identify shapes, he knew the words for every vehicle used 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 to try to jump, hop and climb. Then it hit me, no one has the crystal ball or 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 that gets to make that determination.
You were right though because Von doesn’t learn the same way, and he definitely has learning disabilities. We have taken the steps to assist him in all those areas in his life, and through therapy and sensory integration, he’s learning how to cope with the overwhelming stimuli in the world. Through this therapy, we are opening up space in his brain that can 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. You were right, he does have trouble with social interaction. It is difficult for him to figure out how to manipulate the human aspect of the world, but we will work with him on this as we continue in therapy. Social interaction isn’t easy for many people. There are adults that function well in a society that still struggles with having a social life. This doesn’t make them less intelligent than others.
For 3 years I held on to the word “Rhode Scholar”. I don’t know why that has stuck in my head, but I want you to know something. My child being a “Rhode Scholar” was never my dream. Maybe that day you were projecting your own dreams and goals on to 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 struggled with the stable health, my son is the happiest little boy you will ever meet. He has more love in his 3 years of life, than most experience in their lifetime. Every person that meets him falls in love with him. As a mother, I will not mark my success on what he will achieve academically but 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 just 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 on to 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 in the world. I can’t wait for you to see.
Katie (Von’s grateful MOM)