Sometimes, I can’t help but feel that Alex has had a hard time of it. It’s not just that, of my three boys, his autism is the most severe. Or that he struggles to communicate even simple needs, and is predominantly non-verbal. He grows frustrated, and acts out with aggression. His sensory system is under constant barrage, it seems, and I can’t seem to find a way to help him manage it. He’s had his tonsils and adenoids out, due to frequent illness. As a baby, he experienced reflux disorder, which made the simple act of eating painful. His eating habits grew worse, though, for a long while, instead of better. He’s had one hernia surgery. Despite, surgery on his eye, he’s likely blind in one eye, because he would not cooperate with the treatments that would help strengthen his eye and retain its vision. Now, he’s having another hernia surgery, to repair the hernia on the other side. His health has never been terrible, but it’s never been terrific. Poor nutrition due to his self-inflicted dietary limits, plus the delays, have given him a susceptibility to colds and flus that seem to last longer with him than with his brothers. To top it all off, of the three boys, Alex is the only one who hasn’t retained a deep attachment to a special therapist from his intensive program. In retrospect, the intensive therapy he received was a sham—a waste compared to what it could have and should have been.
I know there are many children, some with developmental delays even more severe than Alex’s, who have experienced even more health issues than he has. Many children have to struggle through without even the opportunity to receive the kinds of therapies and supports that Alex receives. I know this, but it’s not a comfort. Of my three boys, Alex is the only one who has had to endure surgery. This is lucky. All Alex’s surgeries have been fairly minor, straightforward procedures without complications. This too is lucky. But, as much as I tell myself these things, I can’t help but feel like Alex got the short stick from amongst his brothers.
Now, it might seem like I’m feeling sorry for myself. I’m not. This isn’t about me at all. But I do feel strongly that, somehow, I’ve let Alex down. Everything we’ve tried—it’s not enough. Sometimes it seems all the love we can give him isn’t enough to ease the hardships he faces. He’s a wonderful, talented boy. This I know. And I worry that, as hard as it’s been, when he has to go out and fight for his right to be himself and to be recognized as someone with a positive future, that it will get harder still. I love him, and I feel so tenderly for all that he has faced and all he has struggled through, and that I, as his mother, have failed to ease his way.
It was with this somber mood that I left the surgeon on Thursday, who confirmed that yes, the swelling in his testes was another hernia, not hormones, and who felt the urgency warranted a quick turn-over. Alex would be in surgery on Monday morning. I took Alex to his pediatrician on Friday, for a pre-surgery physical.
After the nurse did her thing, Alex’s pediatrician did his. When it was all done, the doctor leaned back on his heels and nodded, a satisfied smile playing across his lips. “Is he okay for surgery,” I asked. “Oh yes,” the doctor said, “he’s okay for surgery.” He looked at me, our eyes meeting briefly, and the smile grew larger. “Alex is in excellent health,” he said, the dignified smile growing broader. The significance of the news must have registered on my face in some way, because the doctor nodded, looked at Alex, and said, “You’re doing great, young man. Keep it up.”
I don’t know for sure what Alex felt or how much of the exchange he understood. I think he was just relieved that this doctor didn’t push the herniated intestine back into place. (Which I had watched with freakish curiosity and wide eyes as the surgeon did so the day before. Alex didn’t cry or anything, but that could not have been comfortable.) Alex tried one more time to fit “Veggie Tales” into the little username box on the computer in the room, and then he let me help him get bundled back up. Snow streamed by the window, hiding the street beyond, as I helped him into his snow pants and zipped his coat. Alex focused on the snowy show.
When I got Alex back in school, I couldn’t help but share the news with his teachers—both the old teacher and the new one. Then, as soon as I was able, I had to share the news again with my husband, in e-mails, and on social media. It’s a hard-won victory and those words, “excellent health,” so much so that it almost makes up for Alex needing another surgery. Almost.