Neil Sedaka with a little dittie…
When the second stroke hit, producing Rachel’s blank stare and prominent drooling, I felt like my whole world bottomed out. My tears rained down as I wondered if I would ever see her smile again, laugh again, or talk back again. With those flat-as-notebook-paper lines on the EEG, it looked very grim.
Did you know that laughter involves both sides of the brain?
Study using EEG topographical brain mapping of an individual hearing a joke: left hemisphere began to process the words. Then the frontal lobe center of emotionality was activated. 120 milliseconds later the right hemisphere began processing the pattern. A few milliseconds later the occipital lobe showed increased activity. Delta waves increased, the brain got the joke, and laughter erupted.
Toward the end of our stay at Children’s, we got a hopeful sign. One day, my mother was standing near Rachel’s bed, holding a froggy plush toy. My mom held the frog and “hopped” it up from Rachel’s toes to her cheeks. It made her laugh. It was like clouds that clear out after a storm. The laughter was a beam of hope out of the shadows of her strokes.
When nurses and doctors saw her smile and heard her laugh, they shed their own tears, and they pointed out how this is an indicator of higher brain function.
With her smile and laughter returning, we had to face another shift: moving from Children’s Hospital to Gillette Rehabilitation. To Jim, to my mother, and to me, this was no laughing matter. We were sore afraid. Perhaps it was fear of the unknown? Perhaps it was relearning new names of nurses and doctors? Perhaps we were all afraid that this new place wouldn’t “work out?” We wanted Rachel fully back. We missed her.
Gillette gave us a tour of the facility before Rachel became a patient. I can remember getting into my old Honda CR-V with Jim driving and my mother in the backseat. We made polite small talk, but we all were nervous to move to a new place. Once there, a kind, soft-spoken nurse gave us a tour of Four North, the wing where Rachel would be a patient. Gone were the sleeping rooms, and that meant far less space for the three of us to live. (If we were lucky, Jim and I could score a room at the Ronald McDonald House.) The nurse took us through a sunlit skyway that brought us to the rehabilitation gym. I can remember being impressed, intrigued, yet uneasy. I got the feeling that this is where Rachel was supposed to learn to move, walk, and talk.
How in the hell is that going to happen? She hasn’t talked or moved much in over a month?
We thanked the nurse for the tour, and she smiled as she wished us well. She seemed genuinely happy that we’d be back with our child, though I couldn’t for the life of me figure out why. A mixture of intrigue and dread filled my heart and mind. I didn’t see anything but more hard work ahead. We headed back to Children’s with hardly a word spoken, keeping our thoughts, fears, and questions to ourselves.
The day we left Children’s Hospital, the nurses showered us with their love and best wishes. Every doctor, every nurse, every staff person suggested that Gillette would be our next best step. And as one nurse wrote on a notecard, leaving the PICU was a large leap forward for Rachel. (All the notes from each nurse are still taped to Rachel’s purplicious wall. I cannot bring myself to toss them out.)
I rode in the ambulance with Rachel as Jim and Mom followed behind us. My daughter was calm, as I remember it. Calmer than I was. Gillette is just a few miles away, so the drive was brief. We arrived, we unloaded, and we rolled into the next chapter of our lives.
We arrived at Four North, and that’s where a bevy of doctors, nurses, OT and PT people of bustled in, smiling widely in welcome. Since Gillette didn’t have sleeping rooms for parents, we were going to live with Rachel in a space that was about 14 x 18. That meant that we were dealing with less storage space, so I had to improvise. I folded clothes for three people and tucked them into any nook, cranny, and drawer I could find.
As I navigated our cargo into smaller spaces, my brain started into overdrive. I had to learn new names of Gillette staff, to take notes as where to go for what, and ultimately, I really worked hard at honoring Jason’s motto of staying present for Rachel and Jim.
* * * *
“Hello, my name is Dr. Nanette.” A short, wiry, spectacled Hispanic woman shook my hand firmly. “And is this Rachel?” she asked, looking at my daughter while still shaking my hand.
“Yep, this is Rachel. Your newest patient here at Gillette.” I touched her forehead, leaning down to give her a gentle kiss.
“So, starting on Monday, your daughter will start her therapy sessions at the rehab unit. Did you get to see that on your tour?” She flicked her stethoscope off her shoulders and gave Rachel’s heart a listen.
“Oh yes, yes we did. Pretty impressive place…” I cleared my throat, wanting to ask a bazillion questions. “Dr. Nanette, I am curious on how all this works.”
“Do you mean, recovery and therapy? How that works?”
“Um, yeah. So, how do we get Rachel walking and talking again?”
She smiled as she nodded. “Well, Rachel will be working with excellent therapists who know how to begin and build a foundation for her recovery. She will see a team of occupational therapists, physical therapists, and speech therapists. The first week will show them baselines, and from there, the team will create goals for Rachel to achieve.”
Dammit. She didn’t say what I want to hear. She didn’t say, “Oh, she’ll be walking and talking in no time. She just needs to do this, this, and this, and PRESTO, she’s back.”
“Ah, I see…So, how long will this take?”
“How long will what take?”
“You know, getting her to walk? Getting her to talk and stuff?”
Once again, the patient smile returned to her face as we talk about *the patient and her recovery. “Well, Melissa, every ped is different. We cannot put timelines on patients here because each one is on their own recovery path. As far as your time here at Gillette is concerned, I couldn’t tell you. But what I can tell you is that even when we discharge you, your daughter will likely continue to receive outpatient therapy at one of our clinics in the Twin Cities area.”
MORE therapy? What do you mean, MORE therapy? What the …
“OK Miss Rachel. Did you hear that? It’s my beeper, telling me I gotta go now. But I’ll be back to check on you before my shift is done, alright?” Dr. Nanette patted Rachel on the shoulder. “Any other questions before I leave, Melissa?”
“No, no.” I said, lying through my teeth. “I’m sure we’ll see each other again, right?”
“Yes you will!” Dr. Nanette shook my hand again, patting me on the shoulder with the other.
I looked at Rachel, lying in her bed. I longed for her to get up and walk, throwing her Dora purse on her arm, stomping out the door, saying, “Let’s GO, mommy!” What’s so painful about this image is that it happened in real life, pre-stroke Instead, she just looked at me, staring right through me.
“Hey, I think someone is going to give us a dinner menu soon. You hungry?” No response. So I found a pair of Jim’s socks. “Hey, I wonder…oh no..I wonder how these socks smell?” I undo the pairing, give one a sniff, and reel back in mock shock. “OH NO! P.U.!”
And then she laughed…again.
“Rachel, you just gotta smell Daddy’s socks! Here..isn’t that just so P.U.?”
She started shaking, she was laughing so hard. And I too laughed along with her.
Suddenly, Dr. Nanette came back and stood at the door, peeking in on us. Her face bore a look of complete surprise. “Is that you, Miss Rachel? Are you laughing?”
“Yeah, she and I used to do this with socks before she got sick.”
Her eyes widened. “So she’s laughing at this now?”
“Yes, you must have heard her? Well, what does that mean to you, Dr. Nanette?”
“It means that she remembers that joke, and it suggests a higher brain function. This is a good sign.” She finished her little proclamation, and I thought I caught a tear welling up in her eye.
I held the sock up and asked Dr. Nanette, “Isn’t this sock stinky?”
I make both Rachel and the doctor laugh. The sound of this mirth melts an icy fear in me.