It’s the strangest thing to find yourself playing a role for which you have no preparation and no escape. That’s how I felt when medical staff looked at me with such kindness and empathy and a trace of “This poor Mom just can’t accept reality.” That’s right, I was abruptly and unwillingly cast in the role of that mother….you’ve seen her in movies, the one who won’t let them pull the plug….the one who sits bedside for decades clinging to hope.
Some of you know about my daughter’s decade-long struggle with violent seizures which has left her brain-injured among other things. I don’t write about this much, mostly because I don’t really want to. I’ve never wanted my blog to become a repository of dreary hospital stories and doom and gloom.
But life is not all hyacinth bean vines and cute little Westie boys, is it?
Once in a while a memory of those early terrifying years will pop up so powerfully and unexpectedly, and with it such a strong life lesson, that I want to tell a bit of the story. That was the case in cleaning out my closet in preparation for fall. Funny the things that trigger memories.
Through a blur of ventilators, medically-induced comas, and at the lowest point, the administration of Last Rites, we never really believed that Jen would die. And inexplicably she did not. Her wonderful nurse shrugged her shoulders at one point later and said, “She’s young.” Sometimes that counts for a lot when you’re critically ill. Jen seemed on her way to some form of recovery when the seizures came back with a vengeance. This time they really did a number on her.
She became a word you don’t ever want to hear describing your loved one: Spastic. She flailed uncontrollably in bed, rocking back and forth endlessly with her hands contorted into a sort of lobster-like claw. And when I would lift her eyelid to try to stimulate some period of awareness, there was nothing. Nothing at all. This went on for two agonizing weeks and in the background, of course, the chilling question of what would remain when she did wake up.
Eventually the hospital informed us she would have to be transferred. The rehab hospital screeners arrived and stood at the foot of her bed as she rocked to and fro. Not surprisingly, they saw her as unfit for rehab.
Except I knew she was in there hiding from all the neurological chaos in her brain. I envisioned her huddled in a dark corner waiting for the terrifying lightning storm overhead to pass before she could make the trip back up to consciousness.
I don’t have to tell you I pleaded with staff, right? Begged and cried for just a little more time before she got transferred “out” to wherever people like her get placed. And one good doctor agreed to let her stay the weekend before transferring.
Saturday morning I showed up early to her room in ICU. She was in her customary fetal position but this morning, somehow, it was different. The relentless flailing had stopped. Her hands had relaxed from that awful contortion. I placed my hand on her cheek to let her know I was there. She opened her eyes and said two words.
“Nice sweater.” This sweater:
How does one burst into simultaneous tears and laughter? Word spread through the ICU like a happy virus. Nurses who had cared for Jen so tenderly were laughing with me and saying, “It IS a nice sweater. No wonder she had to say something.”
No need for me to trot out any cliches here, right? We know when things seem at their bleakest, we sometimes earn a reprieve. And that casting somebody – anybody – into a particular role can be a terrible mistake.
Winston Churchill said something about “This isn’t the end, it isn’t even the beginning of the end, but it is, perhaps, the end of the beginning.” And so it was for us. We had many struggles ahead of us, but I was learning to trust my instincts and to fight for them.
And to wear nice sweaters.
PS: Jen spent almost three years in rehab and did eventually make it to Virginia where she lives nearby. Mercifully, she doesn’t remember any of it.