Denial was an effective route to survival but little by little, day by day, tantrum after tantrum, it was, in fact, devastating. For the best part of the year during which I accepted that he would never be “normal”, never be “right”--always be wounded--I walked around my house/my hours/my days/my life feeling as if someone had kicked me in the stomach. It was a death of a child with no funeral, no flowers, no notes of sorrow. No closure.
There were many times when I would sob, wondering if I would ever again see my little boy, the one I carried in my womb, the one I nurtured through his first few years made difficult by constant ear infections, lack of sleep and much worry over his failure to walk when he should, talk when he should . . .
. . .the one I knew to be smart, funny, generous and loving and to have a sense of humor in spite of all his trials. We didn’t know that in addition to his physical, developmental and learning disabilities he suffered from a mental illness and so we did not know--could not know--if there would ever be hope for his recovery.
Today he is almost 22 and though medicine has been an immense help in balancing out his mood swings and minimizing the aggression, he is rarely ever his “true” self. Deep dark depressions are rare (we don’t have to hide the steak knives anymore, thank goodness) though he does experience a bit more mania than most of us are comfortable with. These are the moments I call his “King of Siam” moods, when he barks orders at people and insists that undereducated and thoroughly reliant him is capable of everything and anything at all. And then there are the times when the stars, moon and sun all line up, when Pinocchio vanishes and my real boy sits down beside me and begins to speak with intelligence, appropriateness and with soul. It almost always happens at bedtime when I am tired and mostly undone but I stay rooted to the spot because the celestial constellations only align as such perhaps once or twice a year--and because I never know what treasure he will pull from the depths of his soul to present to me of his own free will without my having to wheedle or cajole or threaten it out of him--and because I miss him so much.
Last night it was all about church. He felt that he wasn’t getting enough out of it, that he wasn’t doing enough to serve others. Naturally, these are words we would never hear from the wooden puppet whose strings are alternately jerked by the imbalance of chemicals in his brain then set adrift by the raft of meds he takes each day; this gentle giant who requires tons of service from others on a regular basis. He explained that his assignment to ask someone to say the closing prayer at church wasn’t good enough anymore. “I need a better calling,” he said, “maybe something like a teacher or the Bishop. Yes," he said with a nod of his head, "I would really like to be the Bishop.”
Quickly, I bit back a smile at this oh-so-obvious contradiction in his nature (this from a man-child who can’t dish up his own jello or spread his own peanut butter, who will never graduate from college, or hold down a real job, or marry, or live a normal life or ever, merely, truly live) lest I conjure up some emotion that would disturb the delicate balance of his brain and cause the real boy to flee.
I must have succeeded because after a while he moved from his dissatisfaction with all things church onto the opening of the door to his anxieties and fears—
--not silly paranoias about things that don’t matter but carefully considered wolves--as he shared his true thoughts, those of the perfectly intelligent, balanced and logical man he was for the moment, the same one I knew would be gone all too soon.
“What will happen when you and dad pass away?” he asked with a delicacy I hadn’t known he possessed. I would have expected him to say “DIE” like I would have at his age (both chronological and cognitive). At the same time, I didn’t expect him to say anything of the sort since he studiously avoids thinking about these things in an effort to keep his own brain level.
“Oooh!” I thought at this fingering of my personal fears and my chin began to wobble.
“I am afraid that M (sister) and P (brother) will put me in a rest home and leave me there.” Hadn’t I worried often and often about this very same thing? My eyes began to sting with tears.
“As long as all of you are alive, I’ll be fine but if even one of you dies, I.Will.Die.Too."
For the first time in a long time (after all, one can’t grieve every minute of every day) I felt that hollow-but-filled-with-pain sensation in the pit of my stomach as I tried to hide from him the tears that were flowing freely down my face. I struggled with the choice that all parents have to make, the one that prompts you to stay quiet when you would rather speak, the voice that reminds that some things must be learned and not told, that there are times when mere words cannot convey what life will teach.
And so I said the only thing I could. “I love you.”
He sighed and got up to go to bed, but as my boy walked away from me, his legs turned to wood.
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