A Painful Journey

As soon as we boarded the airplane, I knew we were leaving the ordinary world, where it was a given that all kids would speak and have friends, where all moms would someday have an empty nest, where a mother could look to doctors, teachers, grandmothers, and books to learn how to parent her kid and could easily carve out time with her husband, and where the needs of one child would not overwhelm the needs of the other. 

During the long flight to Dallas, I started preparing myself for the decisions that would need to be made soon after landing, but I was distracted. Mark was agitated. His ears were stuffed and hurt: he had trouble sitting still. I was agitated. I couldn’t stop wondering why the pediatrician hadn’t told us sooner how concerned he was about Mark. 

When the doctor first met Mark, who arrived five weeks early grunting, he said Mark was “not a well baby.” Mark was already six and a half pounds, though, and he left the NICU after just a few days.

After ten days, he was able to come home. I was sure he would be fine. I was born seven weeks early and weighed three pounds and ten ounces and stayed in the NICU for six weeks. 

When Mark was a year-and-a-half old, the doctor noticed he moved his wrists, knees, and ankles in all sorts of unusual ways and commented that this type of hypermobility correlates with attention difficulties.

My friends had noticed that I was double-jointed in my freshman year of college. As I leaned back against the wall, my knees bent backwards. I thought of how my flexible ankles had contributed to my powerful six-beat flutter kick in swimming. Perhaps I, too, was easily distracted, but my divergent thinking helped me brainstorm writing ideas. 

“What do you mean?” I asked. “He’s not okay? Are you saying Mark has something like autism?”

“I am not ready to say that,” he said. 

For the next ten hours, the doctor’s words – “I wish I could send you back with the news that your son is okay, but I can’t” — redefined how I saw Mark’s life and gave my previous interpretations of his actions a whole new meaning. 

I thought of how Mark did not like the feel or taste of his first birthday cake and wondered if this meant something other than that he was neat and a healthy eater. 

I thought of how he liked to spin the wooden stacking rings and wondered if this meant something other than that he was dexterous.

I thought of how his lining up toys might mean something other than that he was meticulous. I thought of my little philosopher’s facial expressions and wondered if he was serious rather than wise. 

I thought of my easy baby and wondered if he was merely content to sit and watch the world pass him by. 

I thought of how he was not demanding in toy stores and wondered if he was not showing self-control but a lack of interest in toys. 

What if little about Mark was as it had seemed?  

Would the things that made him a content baby pose problems at an older age, when being pleasant was not enough? 

Mark was two now, an age at which kids start speaking, playing, and sharing more. What if he couldn’t?  

A lady turned to me and asked, “Are you relieved to be moving from the United Kingdom back to Texas?” 

“No,” I told her. “I have so much to do once I get there.” 

But I had no idea how to do it.