Do you know what it’s like to have your child monitored by doctors of all kinds? Do you prepare notes and count seizures for your next neurology appointment? Do you cringe at the thought of having him weighed or his height measured because even though he looks bigger and his clothes fit less, on paper he is not growing?
On paper he is a child whose seizures are under control enough to be transferred to a community neurologist. But will they be good enough? You wonder. You worry. The doctor sits across from your child and asks him to do simple things like look at your mama or give me your hands. Your child can do this and so much more. But he doesn’t speak. He doesn’t play like other kids so the doctor looks at his papers and sees a diagnosis instead of a child who loves the world and everything in it. A child who laughs at the jokes in Elephant and Piggie books but the doctor assumes there is nothing inside because he can’t show you in the way others can. A doctor who can be kind but condescending at the same time. Because she sees your child as a patient. Not a child. But he is a child. He is my child.
On paper he is a child that has not grown in cm or kilos in the past four months but he is healthy and happy. A child who now walks 20-30 mins a day in his walker, eating up his calories so on paper it looks like he is not growing. But he is. And you argue with the doctor to remind him that you are the mother and he is your son and he is well. He is more than well. But you know he needs to grow more. You want to cry but instead you are strong. The tears come like bursts of rain in a storm. Only when you are alone. And you order the next magic supplement and hope it will be the one. You get on a waiting list for a new doctor you don’t want to meet. And you pray. That someday there will be no more doctors telling you how your child, that patient of theirs, number 502, must live his life.
Later you watch your child. Head up. Smiling. Then laughing. He is riding a horse. He is strong. He is growing. In ways which no paper can measure. And you are thankful. And the heartbreak that sometimes comes with parenting turns into happiness. There is your son. And he is happy. He is love.