It is dinnertime and Mark, Noah, and I have just arrived home from the grocery store. While Mark empties the grocery bags and I prepare the chicken, Noah is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. It’s the hypotonia, we are sure. He still isn’t always good at sitting. But he usually cries or laughs, depending on how hard he bumped his head. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well.
Mark picks him up in his arms and moves him into the living room. It seems wrong somehow to leave him on the dirty kitchen linoleum to seize. I make a note of the time (6:39) and grab the Diastat box out of the kitchen cupboard. I hear Mark say, “He is burning up!” This is a good sign. Really. It is another fever-induced fever. Not one that is random. If it was random, that would be a different hell. Would carry different meaning. Like getting a life sentence, if that is what epilepsy is. (We would later learn we would not escape that grim fate.)
This is getting familiar if never comfortable. How could seeing your baby, life itself sparking in his bright eyes and exploring hands and thrilled smile of discovery, suddenly vacant of self. Having watched too many graphic recreations of bodily dysfunction on CSI, I imagine the electric currents in his brain zinging this way and that as the fever rises. His brain aflame with electricity. (It isn’t until many years later that I begin to understand that a seizure isn’t a storm, but the eye of the storm, the calm, the silence of the sound, of the fury.) Where does he go during these seizures? Is it like sleep? Is it like death? Is it like peace?
Noah is on the living room rug, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside Noah and kiss his cheek. Wipe his mouth. Watch to make sure he is still breathing. This time, his lips are not turning blue.
Mark strips him to try to tame the fever. I run and get a cool washcloth. I say, “We should just give him the Diastat. It’s been 4 minutes.” There is no reaction from Noah as we lay the cloth across his bare and steamy stomach. There is no reaction when I sing to him his favorite song, or maybe it is my favorite song, the Cole Porter one I sang to him at the hospital when I couldn’t sleep in the wee hours after his birth. “Sun-tanned, Windblown, Honey-Mooners at last alone, Feeling, Fair Above Par, Oh How Lucky We Are. I Give to You, and You Give to Me, True Love, True Love. And On and On it will always Be, Love Forever True. ‘Cause You and I have a Guardian Angel…” We don’t know what we are doing. We know what we are doing because we are doing what we have to. Mark readies the Diastat plunger and administers it via Noah’s rectum. I keep singing and we wait.
We call it the 5 and 5 drill. It’s how we explain the seizure procedure to anyone who will spend time alone with Noah. If Noah has a seizure–oh, you’ll know, we say. He’ll go limp, but also be rigid. His eyes will flutter and probably roll up–, it’s okay to let him seize–in a safe place, of course–for 5 minutes and see if he comes out of it. (I know, how can that possibly be possible? Why is it ever okay to let a seizure run its course?) If he is still seizing after 5 minutes, administer the Diastat–the directions are right here in the box. Please read through them when we leave.–and wait. If he is still seizing 5 minutes later, use another dose of Diastat and call 911. There is a concern with oxygen. There is a concern of brain damage.
There is always a concern of brain damage. We must be alert to possible seizures every day, every hour. He will go months without one, and then suddenly, thump. Sometimes there are signs, in retrospect. The day before? A long nap. An anomalous fatigue when trying something new like standing. This morning? A low-grade fever of 99.5. But then he acted well. He climbed under and around the dining room chairs like they are his own obstacle course. He slid and swung at the park. Enjoyed a trip to the grocery store where we bought wine (joking that Noah had driven us to drink!) and baskets of colorful fall mums. Then, thump. Is the medication not working? Why? Why has this happened today?
As the years collect we will learn there are rarely signs, only our desire for signs, like the common physical salve: Everything happens for a reason. The reason, of course, being applied after the fact to pretend we have some control over chaos. We have no control over the chaos Noah’s disrupted brain has flung into our lives.
Noah stirs. Mewls. Curls up on his side. Eyes closed. His body trembles. His limbs twitch. We think he is back with us. The medicine has broken the seizure’s concentration, but now he is burning up. But now he is burning up, and now he is shivering. We take him upstairs to the bedroom and lay him on the bed, cover his thin (oh, how concave his stomach looks, how weak his limbs) body with a light blanket. Mark is hesitant, but I remind him how terrible it is to have a fever and be cold at the same time. He radiates heat. I get the thermometer. 102. We administer rectal Ibuprofen. Hold his hand. Watch to make sure he isn’t back in to the seizure again (that has only happened once before). He occasionally yawns and squeezes through small cries. You can feel the heat radiating off his body over an inch away. I scan his forehead. 103. I log onto the internet to double-check when to sound an alarm. It is 103. I rush to get the cell phone to be ready to call our clinic’s triage nurse. We lay cool cloths on his skin. Nothing works.
Mark takes him into the shower, puts him in the blow-up duck tub that Noah used as a baby, but it is too soon. Noah is miserable. Cold. In the past, the water has revived him. This time, he is too sick. We dry him off, apologize, lay him back on the bed and take his temp again. 102.5. We decide to hold off calling the nurse; the ibuprofen is working? Next temp, 101.5. Noah rolls onto his tummy, crosses his feet, tucks his arms and knees under him, and sticks his butt up in the air. His favorite sleeping position; our little turtle is right side down now. His breathing accelerates a little, worries us, but then evens out. The tension is out of the room. We lay on either side of Noah, gazing at him, kissing him. In awe of him, like we were in those first days of his birth, but now for reasons less joyful. If we were once amazed by the miracle of him, we are now cowed by the mystery of him.
I cry a little, then. I’ve learned that tears don’t changed anything, but this time I cry for Noah. I cry because it is so sad that life is already not fair to him. All children, I think, should be born with a clean slate. With health. And unlimited potential. But that isn’t the case. Noah’s potential has been limited. By seizures. By low muscle tone. By crossing eyes. By allergies. The limits seem endless. He cannot have ice cream because he is allergic to milk. He is not walking long after other children his age. It isn’t fair to him. He who should have all the opportunity to be happy. And I hope he will be. I hope he will be happy, and we will help him find that happiness no matter what that means.
But I imagine him having a seizure at the playground. On the stairs. I imagine my slight, thin baby as a slight, thin boy, mocked because he can’t play kick ball. I imagine him struggling to talk, or read, or hold a pencil. I imagine him pushed down by a crowd in a hallway. I imagine him middle-aged and alone, sitting at a bus stop, no home, no hope. But, I am learning: these are just imaginings. Strangely, the unexpected otherness of Noah, the expectations of parenting unmet, the dreams of his potential ashed, has also taught me that the paralyzing fears are just as slippery and ephemeral as the hopes. Nothing is real except now.
What is Noah’s potential? When he seizes, all I wish for is having him alive, with me. Each seizure, he is absent, like death is due and will decide whether to stop. Noah’s seizures are whole system and when he becomes still and stiff we drop into a kind of purgatory, powerless to decide if we might ascend. Noah becomes absent of everything but his body, and it would be, it seems, just as easy for him to settle more peacefully into death rather than struggle back to the surface choking life into his lungs like the half-drowned. But more than alive, I want Noah to come back to us as the same Noah who left for those long minutes. No other more damaged version would suffice. I will not pretend I haven’t thought about how much easier my life would be if he were just to fade away.
The ambiguity of my feelings for my child hovers over me like a curse. I am incredibly grateful for the astonishing miracle that is this little beautiful and resilient child. I do not doubt the ferocity of my love for him. But I also fantasize about finding myself in a dark alley, like on the set of some cheap sci-if movie, and coming upon a time machine. I have little doubt I would enter, choose to return back to my motherhood-less life. Selfishly, because I long to do that part of my life over: why didn’t I travel? Why didn’t I go back to school? Why didn’t I write that novel? I wonder if becoming a mother was just a shortcut to purpose in life that had seemed purposeless. But also self-protectively. What of the black fog that shrouds me since we first learned about Noah’s disabilities? People tell me it is normal to mourn the child you dreamed of having, but what about mourning the mother I dreamed of being? When I chose to have a child, I did not know I had also chosen to become harbor to a lifetime of heartbreak.
After an hour nap (I watch over him as Mark makes us dinner—we have learned life must go on), he stirs. Noah is listless, groggy, and can’t seem to close his mouth. I offer him my breast and he is able to take in milk. Mark brings up a bottle of water and Noah drinks more. He makes his talky sounds. We call our dog, Gracie, into the room, a sure excitement getter, and Noah forcefully tries to say “dgogd”. After a minute, he claps, then he gives a smile. All of his best tricks.
We dress him, carry him downstairs, feed him mandarin oranges. He eats and eats. The color is back in his face and he is beautiful. Sure, he is weak and listless the rest of the night, and goes back to sleep by nine, but we think he is okay. Believe that he is okay. We have all survived one more seizure. And suddenly it feels like nothing. Like a close call on the freeway, a car coming fast, a squeal of brakes, then silence. No impact other than the smack of adrenaline, the tingle in your fingers, the beating of your beating heart.