In the middle of our three-day weekend, L. woke up one morning and told me his throat hurt.
"Oh no!" I said, the strep throat alarms going off in full swing. I am terrified of strep throat. While it has never affected my kids too badly, it knocks me flat out.
"Well," L. said matter-of-factly, "my throat has been hurting for weeks now."
After prying more information from him, it did seem clear that he's had a sore throat for at least two weeks. It also seemed clear it probably wasn't strep, so I felt reassured. But we did take him to the doctor yesterday and found out he's got a fairly well-established sinus infection.
"Must have been going on for some time now," the doctor mentioned, almost as matter-of-factly as L. had the morning he told me his throat hurt.
There's no point ever in asking L. why he didn't say anything to us sooner. Like almost all kids with sensory issues, L. has a very difficult time articulating the things that are wrong. We try to help him understand his own body--the signals it gives off to indicate hunger, for instance, or pain, or just something-isn't-right. It's hard to raise a child who is out of touch with his own body, and who has trouble interpreting and communicating the signals the rest of us take for granted. When he was a toddler he never told us he was hungry, or thirsty; he never asked for snacks, and daily life was always one large guessing game. "Are you hungry? Thirsty? Tired?" we'd ask, showing him crackers and water and rocking him so we could watch his cues (those staring eyes, the dreamy, half-mast lids); even then the disconnect was always there--always uninterested in food, we'd have to distract his attention to get him to eat.
Sometimes I cast my mind back, back into his infancy, trying to see if I can find a starting point to all of this. Was there a time he wasn't bothered by his world? I think of him in the NICU after birth, sucking his fingers and staring up at the lights and vents above him. He seemed calm then, a little detached from his world, and perplexed about it all, but how could he not be? What must he have thought, to go from the warmth and darkness of the womb, into that world of lights, and the medical hum of the hospital machinery around him? Was there a time he ever ate right? Yet I know he did--and didn't, too. My journals and photographs from L.'s babyhood are proof: he once loved chopped up veggie sausages for breakfast, and macaroni and cheese, and peanut butter crackers. Yet we’d have to spoon the food into him, talking all the while about fire trucks or trains or outer space; he would accept the food, bite by bite--in between talking, of course.
Sometimes I fall into that parental trap of thinking that the way things are now with L. will be the way things will always be. I worry about the future: when left to his own, will L. eat? Will he think to bathe, to brush his teeth? To go to the doctor if he’s not feeling well? What if something goes really wrong with him, how will he know?
But then another memory surfaces from underneath the layers of all the others:
When L. was five days old I woke up one night, my left arm stiff and all pins and needles from being under my head for so long. L. was in bed next to me, his tiny body arched in a little twisted comma shape next to me. His head was pressed to the front of my white nightshirt, his lips pursed in that funny newborn sucking shape, rooting and looking for the milk. I watched him and marveled that so tiny a being, only five days into the world, could be drawn like such a magnet to his mother's body. I marveled that I had woken up at just the right time, our bodies in sync already, to help him nurse before the rooting turned to crying.
"This is so much easier than I imagined," I remember thinking to myself that night. "He knows just what he needs!"
And even though I laugh a little wryly now about silly, naive me, who once dared to think that something as simple as feeding L. could be easy, I find the memory comforting, and safe, and solid, like roots in the past, anchoring me to our beginnings in that bedroom, in a hot apartment in July. I think to myself: he was so little, yet so strong; so helpless, yet so determined; and that moment was so perfect, and so very, very real.