He seemed so relieved when I walked into his room, long after bedtime, sitting cross-legged in his bed and trying hard to be a good boy by staying put. Though every part of him wanted to jump out to play with his cars across the room, he instead sang to himself until I heard him. In the dim night-light glow, I smiled at him and quietly asked him how I could help. Happily, he flopped back onto his pillow and quickly patted the mattress beside him.
He doesn’t have a lot of words, but just between the two of us, we don’t really need them sometimes. We get by pretty well with facial expressions and body language. A ripple of delight went through me when I saw him make such a clear gesture instead of yelling in frustration.
“Right here, Mommy” he was telling me by moving over to the far left side of his tiny twin mattress, ” I need you.”
I didn’t even hesitate to kick off my slippers and hop in beside him and his body relaxed as he felt my weight on the bed. I am not a small woman and prefer the real estate of a king-sized mattress, but I would cram myself next to him, horizontally, on a park bench if he asked.
He flipped around for a few minutes, chirping happily and accidentally jabbing me in my tender parts with his bony little elbows and knees. I waited patiently, my shirt had uncomfortably pulled up high in the back and the freezing cold wall was shocking against my bare skin, but I dared not move.
Eventually, he laid still, the excitement of my cooperation wearing off, and he pulled his blankie up to his face, rubbing the corner back and forth against his lips as he always does when he is trying to find sleep. As his eyes got heavy, I slowly moved my hand to his forehead to rub gently back and forth.
It still seems a small miracle that he allows me this contact, this simple act of comfort. When he was an infant he would physically recoil if I touched his head at all, and together we put in a lot of time helping him to tolerate gentle touch. He came home from his weeks in the NICU so hyper-sensitive, so tense and unhappy in this strange world, he had been through so much.
In bed, as sleep came sneaking around the corner, he sighed deeply and then quickly turned to his side, and pressed the front of his body into mine. His face was only inches away and I watched as his eyelids drooped and then quickly popped back open to make sure that I was still there.
Physical contact is still difficult for Corrigan to initiate and we are still teaching him the simple idea of a hug. We have been showing him his entire life, but to this day he tenses when pulled close and almost never uses his arms in any fashion. Instead, we have worked up to the point that he passively allows himself to be brought close and squeezed. Reciprocation still seems far away.
So I was surprised that he chose to roll towards me in his bed, especially so close. He didn’t want me to rub his head any longer, which he demonstrated by yanking my arm and putting it on the bed in between us, so I stayed quite still and enjoyed the proximity. The opportunity to study his face, admire his beautiful eyelashes and spend time in the quiet whispering more prayers.
I caught the scent of his medicine on his hot breath and I thought about how much I hated that smell when he was first diagnosed, but now I smile when I catch the scent on something around the house. I can find it in the coolers that hold his medical formula, his pillows and on his blanket, of course. It is comforting to me now. His signature.
Suddenly, his eyes flew open wide and he stared deeply into my eyes for several minutes. I wasn’t sure if he were completely awake or not. “I love you, Buddy” I whispered and then leaned in slowly to kiss him on his forehead. He smiled, paused a moment and then threw his tiny little arm up onto my shoulder. I nearly cried.
These moments. These tiny little things that seem so insignificant to most people, especially those with children that have no sensory and boundary issues, the lucky ones whose children do not live with anxiety and fear, who can communicate normally and haven’t had to fight every step of the way for any kind of normalcy, I know this seems self-indulgent. But to me, in that moment, it felt like a victory.
We have worked to build his trust from across the room. We have worked to make him feel safe enough to let us hold him in our laps. We have spent his entire life trying to show him that physical expressions of love are nothing to be feared and he has worked hard to allow it. First, with his back to us, then moving to allow us to snuggle him from his side, and now making these tiny movements towards something most of us can do without issue. A simple hug.
These last few weeks have been so hard. He hasn’t been himself and some glances into the workings of his metabolic system show that things are askew. His bad behavior likely a result of some elevations, things that his team have not been able to get a handle on despite making changes and lots of trips up and down the interstate for labs.
He has been angry and frustrated, his brain unable to handle the “itch” caused by instability of his condition and all of the adjustments. He doesn’t want to be bad. When he feels well, he revels in our positive attention and aims to please but when he feels “off” he cannot help himself. He can’t relax and he can’t seem to be quiet. He becomes that same agitated baby we brought home from the NICU nearly five years ago.
So that evening, just when I thought that moment couldn’t have been better, his little hand moved from my shoulder and down to rest on my neck. He then wrapped his little fingers in my hair and twirled it slowly, like he normally would have the edge of his blanket instead, and slipped off to sleep.
I whispered one last prayer, this one of gratitude.
Even among the chaos, there can be moments worth cheering. I am always looking for them, like a survivor on the battlefield after a brutal skirmish, these moments are what keep me going. We are still figuring this out together, Corrigan and I.
Victory by night light. A wonderful way to end the day.