Dylan's Room, 10:30 p.m.

The most gaping void I feel now, with Dylan gone, opens wide at night.

I know that if I've gone too long without allowing myself to really feel how much I miss him, I'll end up in his room.  I can still picture the crib, the oxygen concentrator at the door, humming.  I can still see the wheeled cart where we kept his IPV, cough machine, suction machine and nebulizer.  I can still picture him sleeping peacefully, unmoving, with his Pixi on (his nose mask for the bipap respirator) and a faint blue light emanating from the bipap. And the numbers on the pulse oximeter above, sitting on the dresser.  Those ever-present numbers.  Heart rate, in red, well under 100.  Oxygen, in green, well above 96.  That was the sweet spot.

But the room is nearly empty now.  Dylan's most cherished belongings are neatly packed in a plastic tub of green, his favorite color.  A few cases of Pediasure await donation, as soon as I can find a home. There is nothing left but a rocking chair, some Snoopy decals on the walls, and his favorite dolls--doggy, Winnie the Pooh and Piglet--sitting on the empty dresser.  The ticking of the wall clock, which we hung so that we could time his treatments, is deafeningly loud, something I never heard when all the machinery was on.

I feel the need to stand in those places, to remember the steps I took. Every night I set the syringes of medicine and a water flush on the nightstand, wheeled the feeding pump in, bag loaded, and plugged it into the wall.  I would place my phone at the head of the crib so I could play Words With Friends with one hand and hold the face mask in place with the other during the IPV treatment.  I plunged the meds into his feeding tube, then flushed it with water, then started his slow overnight feed.  Next were his respiratory treatments--IPV for 15 minutes with saline, then five sets of five coughs.  Then we were done, and I replaced the Pixi mask, kissed his forehead, and turned on the bipap and O2 concentrator in a series of swift movements so that he would go back to sleep quickly.  Every night without fail, he would take an audible breath in when I replaced the Pixi--a sort of reverse sigh of relief--because he knew he was safe to fall back asleep.  The numbers of the pulse oximeter would fall into the sweet spot within a few seconds as I stood at the door.

Those times were just his and mine.  He slept through most of it; he would whimper a little when I removed his mask, acknowledging that he knew what was about to start, but then settled down as soon as I started the IPV.  I admit that some nights, as I prepared the feeding pump and drew the meds while catching a few minutes of TV, I felt ambivalent about the duty.  There was so little down time between Colin's bedtime ritual and Dylan's nighttime treatment that I felt as if there was to time to breathe myself.  But once I got in and sat down by his crib, all of that stress-induced irritation went away.  I could just be with him, quietly caring for his lungs, giving him his nutrition, repositioning his body, kissing his forehead, getting a whiff of his shampooed hair and skin.  My favorite work.

Since I can no longer reach in to his crib, remove his mask, kiss him, hold his feet in my hands, or smell his smell, I sit down in the rocking chair to hug his Pooh Bear and cry hard, purposeful tears, my penance for emptying his room of its contents.