Today Daddy and I will pick you up early from school and take you to a neurology appointment. We need the doctor to sign some legal papers. I can’t believe that in just 18 days you will turn 18 years old. I’m not sure yet how we will celebrate a birthday that had never been guaranteed. Do you know how amazing you are?
You were about five months old when the doctor confirmed you had lissencephaly. We read that the average life expectancy for a child with this brain malformation was two years. When you were 18 months old, we traveled to Chicago to see another doctor who said you had a 50% chance of living to 10 years old. Those numbers scared me. To this day, I hold my breath when I open your door in the morning and I am grateful when I hear you breathing. There are few things better in this world than the smile you give me every day before you’ve even opened your eyes.
You have been through so many difficult medical challenges. You have managed them far better than Daddy or I would have. We have spent the last 18 years focusing on your ability to choose happiness under the toughest circumstances. How did you smile at the surgeon after a 10 1/2 hour scoliosis surgery when you were eight years old? How do you laugh at me in the middle of your seizures? You, my son, are pure love and light.
Today Daddy and I will ask the neurologist to support our petition to the court for your guardianship. Soon, we will ask the pediatrician to do the same. After eighteen years, we need permission to continue advocating for your medical and educational needs. In order to maintain our rights, we have to legally strip you of yours. In order to prove our case, we will tell a judge about all the things you cannot and will not ever do. We will highlight every medical diagnosis, the sum of which debilitates you. The legal document reads “IN THE MATTER OF BENJAMIN DESIMONE, AN ALLEGED INCAPACITATED PERSON”
It’s a horrible statement. I am sorry my love. For your entire life I have tried to let others see your brilliance and now, because people in this world have not been kind and have taken advantage of those who could not protect themselves, Mommy and Daddy have to prove that you cannot take care of yourself even though you are an adult. We will have to prove our good intentions to a lawyer, and ours. I have heard that once we are granted the right to remain your guardians we are expected to file annual reports so the court can monitor us. I suppose I understand why such a safeguard exists, but it bothers me.
It bothers me that we have to prove our intentions to anyone outside our family circle. Your opinion is the one that matters most and I promise, nothing Mommy or Daddy says to a court changes what we think of you. You are amazing. We will continue to make decisions for you by paying close attention to the ways you communicate to us, with your eyes, facial expressions, and mood.
Today will be just another day, except Mommy and Daddy are going to pick you up early from school. Don’t worry. The visit with the neurologist will be easy, no blood work or EEGs. Mommy will try to be as brave as you are when I hand the legal paperwork to the doctor. I can’t promise I won’t cry over the next few months of legal requirements, but I know your smile and laughter will get me through.
I will always love you Benjamin,
Courtesy of a colleague