A question I'm often asked about my son, who has Down syndrome (Ds), typically comes in several forms:
- "Can the doctors tell you how severe it is?"
- "How is he doing?" And, "Is he meeting his development milestones?"
- "When will you know how he... well, you know, how he is?"
I'm not writing this to knock well-intended questions. I'm trying to describe what this journey feels like as a parent in the hopes it helps educate others who may have wanted to ask the same questions.
So, the answers to the questions above are:
- "Really well!" And, "No, not really."
- "I do know what you mean. The truth is... We'll know when we know."
I understand the questions. I do.
When The Husband and I received Charlie's prenatal diagnosis, we wondered what we could find out. I accepted the answer (i.e., "virtually nothing") before The Husband reconciled his frustrations with the unknown, but it wasn't easy.
As we wove between doctors' appointments, ultrasounds and specialists, The Husband greeted each, allowed them to perform their examinations and then asked.
I learned that I can be polite when introduced to the unknown, but over time my manners will strain and, ultimately, I will suppress an urge to scream at the next person who tells me I need to be comfortable with the unknown.
Facing such an enormous unknown felt sickening, overwhelming and surreal. The physicians made sure we scheduled the amnio that would confirm the Ds diagnosis as early as possible. At first, I didn't understand why early timing mattered.
In fact, the urgency ensured we would have time to decide if we wanted to terminate the pregnancy before the government told us it was too late.
The first time I realized the physician was counseling us on this timeline was a rare prenatal appointment, by myself. The Husband had a meeting at work, and the appointment was supposed to be routine.
A cop will tell you there's no such thing as a routine traffic stop. A woman with a high-risk pregnancy will tell you there's no such thing as a routine doctor's appointment.
As the doctor bumbled around the bush, I remember looking him in the eye and holding up my hand.
It wasn't about religion. It wasn't about choice. It wasn't even about something as basic yet fundamental as life. It was very, very, very personal. It was about my son. I will never judge someone else for making a decision about her own body. For me, terminating my pregnancy was unfathomable. (I was busy breaking other Catholic rules!)
I was unmarried, but I knew I'd found my soul mate.
I was scared, but I knew I wasn't alone.
I was petrified of having a child who would need me completely, but I knew I would never, ever turn my back on him.
It was a personal decision, and only months after Charlie was born did I learn statistics related to the percent of terminated pregnancies of children believed to have Ds. I wept and thanked God for Charlie.
The truth is that we won't know how much Charlie will be challenged cognitively until... we know. Until he can either do something or we realize he is struggling to do something.
And the truth is, when people ask how severe Charlie's challenges are, they might as well be asking me, "How much help are you going to give your son?"
That's a question I'm happy to answer anytime.