after the bath

after fifteen and a half weeks of seizure freedom, calvin suffered a grand mal having just stepped out of a warm bath. he was standing at the sink as i dried him off and he went quiet. i watched his eyes become vacant, the blood drain from his face, and his lips become dusky. even though he can't speak, i kept asking him what was wrong. i felt for a rapid heartbeat, noted his slowing respiration, and then i knew what was coming. he let out the telltale blood-curdling howl, went stiff and began convulsing. i grabbed him around the trunk so he wouldn't fall, and i lowered him as he seized onto the small bath mat on the floor. i bunched the mat up under his head, cupped one of my hands under his bony knees, and wedged one of my legs under his ankles so he wouldn't bang his head and bones on the hard tile floor.

when it was over i was able to get a pull-up on him and some sweat pants and a long-sleeve t-shirt. he was limp as if he were drunken or unconscious. i had to hold him under his armpits and drag him down the hallway to his bedroom. there, i was able to get him into a floppy standing position so that i could pick him up under his shoulders and knees to carry him a few feet to his bed to drop him in.

i'm grateful i have a have a strong body, and that i have continued to practice lifting his shy 100 pounds just in case something like this were to happen. he's sleeping now.

yesterday, calvin spent most of the day with his fingers in his mouth—not a good omen. he's been out of sorts more often these past few weeks. he didn't seem to want to take a bath, but he needed one badly. i wish i had "listened" to him.

i fear my sweet boy will have another seizure today or tonight; they often come in clusters. i fear he will not regain the long stretches between seizures that he has enjoyed this past year. he has been doing well lately. i am feeling despondent.

send us some good mojo, will you?


  1. Sending good vibes and strength to both, though I know how strong you are. I hope you feel the love being sent to you by so many.

  2. I’m so sorry. Sending lots of good thoughts your way.

  3. After a good cry, I sit down and try to absorb the horror of this helplessness and your courage in reaching out to us, the world I send you love to sweep into your heart, so you know how precious you are, as your precious child is. We just have to accept the unacceptable, and keep loving the very best we can. May fear and absolutely appropriate rage be softened into gratitude that he is still here. I am so very sorry for this suffering.

  4. Quadruple HUGS.

  5. I am sorry. Somehow the seizure after a long stretch breaks your heart as the count starts again. Feeling this and experiencing it too often lately. Love to you guys