The Richest Person in the World
By Adrienne Jones
Mom! I have an idea for Valentine’s Day. Let’s get candy coins. You know, those chocolate ones? Then I’ll give them to everyone because I have so many people to love and that makes me the richest person in the whole world. Get it? I’ll give them candy money because I’m so rich!
Mom? Is that a good idea?
Mom! Why are you crying?!?
I’m about the least sentimental person this side of Spock, but those words from my 11-year-old son’s mouth hit me right in my middle. I’m the richest person in the world because I have so many people to love from any child would be wonderful. From this particular little boy, it is miraculous.
Carter was born the very unhappiest baby who grew into the very unhappiest toddler and the very most anxious preschooler. By the time he started school, he had a list of diagnoses as long as his arm, none of which seemed precisely right, and although some of those diagnoses were very big, adult, and scary, they didn’t quite capture the long crisis our lives had become. A few months before Carter turned 7, I had begun to lose hope that he would ever experience any happiness more meaningful than the momentary excitement of a new toy.
What we know now but didn’t then was that Carter suffered a prenatal hypoxic brain injury that impacted his brain from stem to stern. He has a sleep disorder so severe that, when unmedicated, he sleeps every other night, only succumbing to slumber when his body is finally powerless against overwhelming exhaustion. He has hypotonia (low muscle tone) and is weaker on the right side of his body than his left.
In spite of all that, the most arresting reality of life for Carter and all of us who love him was, he was miserable. He suffered seizure-like rages during which he begged me to kill him or have him arrested. He tried to throw himself out of the car on the freeway. I restrained him when he tried to hurt himself and dragged him off of other children when he tried to kill them. My husband and I slept in shifts so we could supervise our wakeful, terrified son. Carter lived like a dervish: never playing, never sitting, rarely smiling. He was a blur of disorganized, frenetic activity, terrified of everything and enjoying nothing.
These days, Carter gives me full permission to tell the stories of those years in any way I like, but he rarely discusses it himself. He can’t bear to think about it. By that fall, he had developed psychotic symptoms, we had removed him from public school because the staff wouldn’t stop punishing him for crying all day, and finally, we got an appointment with a pediatric psychiatrist.
That pediatric psychiatrist was Dr. S, and we had a good many more chaotic months and terrifying experiences ahead of us, but it was a turning point nevertheless. She was not the first professional to listen to us and take Carter’s problems seriously (though there were plenty who scoffed and dismissed me as an over-anxious mother), but she was the first one who took us seriously who was also qualified to help. It took months to find a drug combination that helped Carter sleep and eased his psychosis and rages, but knowing Dr. S was there, working with us, caring about Carter, and available by phone gave me hope.
Then came D, a new therapist, a young guy who looked at my son and saw not a diagnostic puzzle to be solved or a series of symptoms to be squelched, but a child with whom he could develop a relationship. Carter, always a cautious soul who loves his inner circle completely but is very careful about who he allows into that circle, trusted D in a matter of weeks. D was the one to break the news to me that Carter was delusional and hallucinating, and he was the person who stayed on the phone with me for an hour while I cried over this information. Through the fall and winter of 2009 and into the early months of 2010, he answered my questions, lent me books, and lit up with genuine happiness when he greeted Carter. He assured me over and over that, should we need to hospitalize Carter, he would spend time with him every day, and while we never did have to admit our little boy, the knowledge that D would be next to us if that happened was immensely reassuring.
As we began the slow, uncertain journey to stability (an improvement we were never quite confident about until Carter’s illness had been receding for over a year), we were gradually adding new people to our lives. First came a small support group for parents of children with serious mental illness (never underestimate the power of the presence of people who understand your experience). Next, a new school for Carter, a tiny community of children with special needs and their dedicated teachers where my son feels safe and confident enough to learn, and where he has developed his first genuine friendships. Finally, a new faith community, where most people don’t really understand but everyone is willing to listen. Soon, we’ll embark on a brand new adventure when Carter becomes a Special Olympics athlete.
Perhaps all of that sounds a little flippant, like an old fairy tale where everything was dark and scary and suddenly the sun came out and surprise! Everything is wonderful again! In fact, the road to the relative stability we enjoy has been bumpy and profoundly difficult. Our lives are, and will remain, more challenging than they would have been had Carter’s brain not been injured. In spite of all that, Carter really is the richest person in the world because he has so many people to love.
Well, maybe he’s the second richest person in the world and I’m the richest, because I get to be his mom. I got to help him buy chocolate coins and make Valentine’s cards for all the people he loves and who love him in return, and for the mom of the boy who was once filled with little except fear and rage, well…
I think I have something in my eye.
Adrienne Jones lives in Albuquerque with her husband and children, and in the early hours of the morning, just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style [nopointsforstyle.com].