On a Friday afternoon, we left the hospital for home once my mother arrived to keep the Fighter company. My stepson and his lady, Ali, would relieve my mother and spend the evening at the hospital so that we could spend the night in our own home.
Our big goals to attain were to get Rachel’s new room ready and convert her old room into an office and/or dining room. Her discharge date was still unclear. But by the end of August, I’d be knee deep in teaching, so home decorating had to happen well before then.
“I’ll meet you at home,” said Jim, after a quick kiss as he escorted me to my car in the hospital ramp.
“I hope I remember how to get there.” It had been at least one full month since I had been there last.
We swung onto 94, heading west. In my time at the hospital, I hardly drove my car. The result was a dizzying feeling that came over me as I drove my beloved 1998 Honda CR-V in Friday afternoon traffic. Driving felt as though I was moving too fast.
Focus, Melissa. Flip your visor down to block out the stunning, bright sun. Come on, now. You know how to do this thing called driving…
But I’d forgotten how. The wheel-clutch-gear-shifty-thingee had become an act that had taken a leave of absence, forcing me to recall it from long-term memory.
It was a gorgeous afternoon. The sunlight dazzled on Lake Minnetonka as I looped around it. I watched people slink into their boats with coolers in tow, sunglasses perched on their noses, and sandals popped onto their feet. They all appeared happy, living blissfully normal lives. I wanted to pull the car over, get out, and shout to anyone who could hear, sporting such summer gear:
HEY! YOU! YOU ARE LIVING A NORMAL LIFE. YOU ARE ALL HEALTHY AND HAPPY! YOU ARE NOT LIVING IN A HOSPITAL! DO NOT, I REPEAT, DO NOT TAKE THIS FOR GRANTED!
But I didn’t. Instead, I cracked my stiff neck, kept my eyes on the road, gripped my steering wheel, and looked forward to my furlough from hospital life. In this break, I get to drink a beer. In this almost-vacation, I get to sleep in the same bed as my husband and yes, get laid. In this slice of heaven, I can drink my own coffee without some nurse snatching it away from me. All good things, I assure you.
I pulled into the driveway. I get out, stretched my arms wide, and felt happy to see the house, not the hospital. Our house is not much to see. It’s not a McMansion. It’s not a bungalow. It’s not one that you’ll see on HGTV, something I call, house porn. Oh no. It’s a simple two-story house with a tuck-under garage that was built in 1963. This design was probably popular back in the day. George Bailey said he loved his “drafty old house” after Clarence the Angel saved his life. I certainly loved my very plain, imperfect home a lot more after living inside a hospital.
We bought our home in 2003, the year after we got married. My parents helped with the down payment, and we’ve made the best of it. Jim had turned the basement into a recreation/den area. When I walked into the basement, I got a flashback of a healthy Rachel, hanging out with us. My treadmill is off to the right of the television, and many nights, I would walk on it while Jim watched television. Rachel would stand – stand – pretending to be walking like I was. It was sort of like Michael Jackson, moonwalking.
That is a memory of the past now, I thought.
I trudged upstairs with my overnight bag. I tossed it to the corner, grabbed a beer from the fridge, and sat on my deck, taking big, deep breaths of air. Real air. Hospitals do not contain real air. They contain dense, refabricated air that has gone through a strange filter system, which makes it smell funky and antiseptic. Here, on my deck, I caught a whiff our next-door neighbor’s freshly cut grass. Perhaps I got a snifter of the lake. Even a dead fish smell is better than a hospital. Take my word for it.
Between gulps of fresh air, Jim came out to join me.
“So, I’m thinking we’ll grab breakfast somewhere tomorrow, and then head to Home Depot for paint.” He pauses to sip his own beer. “So, what do we color Rachel’s room?”
“I think purple is our best bet. Oh, and my mom wants us to bring us the swatches so she can make curtains for her room.”
“Sure. I think we can arrange that.”
The sunlight had slipped behind the tall trees on our left. A cool breeze kicked up, tickling my skin with goosebumps.
“Beautiful night,” I offered.
“Yes, yes it is.”
I sunk back into my deck chair, looking at the teeming twilight. Even with my hearing, I could still pick up the crickets’ song. I watched the sun slope into the western horizon, setting the line of trees ablaze with golden light.
I imagined Rachel at home…in a wheelchair. Honestly, I didn’t want to. I simply wanted my original kid home with me, bossing me around, holding me, asking to sit in my lap. Sitting on that deck, I could not see how that girl was still in her that body back at the hospital.
But then, just as I’m about slip into a shower of tears, I get this image inspired by too many movies, I’m sure. The image is of Old Rachel, the healthy one, and she’s on the other side of a one-way mirror. In my vision, she is banging on the mirror, yelling at us, saying, Let me ooooouuuut! I’m IN here. Hey! Get me out of here.
“Jim, what’s going to happen to her?”
“Who, Rachel? Well, I think she’ll continue her recovery, even when she comes home. They have outpatient clinics. She’ll just continue to get better. Honey, I keep telling you, she’s young. She will get better, I’m sure. I just don’t know how long it will take.”
“Did I tell you she can actually hit that button for Lisa in OT? I watched it happen with my own two eyes. She couldn’t do that a week ago, and now, boom, she’s doing it,” I said as I clunked my beer down on the table.
“Last Saturday, the speech gal was singing the alphabet song, and I swear, she almost sang along. Almost.”
“OK, but do you think she’s in there? Really in there. The Old Rachel?”
“I don’t think the Old Rachel ever left. I really don’t.”
“Hmph… Perhaps you’re right. It’s hard to see that now. But all the therapists say she’s getting better. They say she works so hard, and she tries her best.”
“Then believe what they say,” said Jim, as he placed his empty beer bottle on the table.
“Easier said than done,” I replied.
“Look if you want to drown yourself in worry and live in a dark place, you go right ahead. Or, if you want, you can follow me into bed and give me a backrub instead.” I tipped back the last of my beer, sighed, and said goodnight to the darkness full of its real air and glorious sounds. Being in bed with Jim instead was a no-brainer.
The next day, I took a shower in my own bathroom. Not a big deal to many, but for me, it was heaven. I didn’t have to travel down four different hallways to get there either. I stood there, longer than normal, letting the hot water hit me, especially in the lower back. I had some kind of pinched nerve or kink that I could never resolve; I felt it settle there just after checking into Children’s in June.
After we showered and checked the mail, we scored breakfast, purchased paint for Rachel’s room, and a rug that was, indeed, wheelchair friendly. Back at home, Jim painted while I sorted through her clothes. Every other item I pulled from her stuffed drawers conjured up memories of a healthy kid. One who walked, talked, sassed, and smiled her way into my heart. In her first four years, we packed a lot of good memories, and now I had to reconfigure the scrapbook in my head: what would a good time look like for us, with Rachel in a wheelchair?
I cleaned the bathroom, the kitchen, and made our bed. Sure, it was lovely to be home, but since Rachel came along, the house belongs to her as much as to Jim and me. Being home without her was off key.
I also felt angry. Getting away from the hospital made me realize how stressful and surreal that summer had been. Really, I had no idea I’d be living inside a hospital. I had no idea I’d be watching the summer roll by without a trip to the library with Rach. No trip to Lake Harriet. No T-ball. No swimming lessons.
As I gathered up all the clothes that were too small, images of her recovery flooded my mind: she could turn her head in multiple ways, and more smoothly so. She could use her arms a little more too. I watched her push a button down and then back up; she did it multiple times once she got the hang of it.
I recently witnessed her lift up her hand, pick up a puzzle piece, lower the piece into the rightful place, and drop it in. A week prior, she couldn’t do that. One day, she lifted her hand up to my face and touched it. Instant tears – just add Rachel’s hand to my face.
* * *
A few weeks later, I was back at the hospital after a day of teaching. Jim was on his way home from work, Rachel was resting from a full day of therapies, and I sat and peered at my calendar, zeroing in on our potential discharge date of October 7.
Will we be ready to go home by then?
I stood up, stretched, and peered out the window. The afternoon September sunlight gave me peace. Yes, I was itching to go home. I missed my cat. I missed my own fridge. I missed having ready access to coffee and beer. Our overnight leave of absence weeks earlier only made me ache for home more.
“OK,” Jim said, as he burst into the room. “We have an overnight pass for the night to spend it at home.”
“Really? How did you manage that?”
“Real simple, you just go up to one of the nurses, and say, ‘Can we have a pass for an overnight? We want to go home.’ It’s not hard…”
“Wow! Rach, you wanna go home for the night? Doesn’t that sound great?” She smiled, so I took that as a yes. “Home. Do you remember that place?”
“Melissa, she understands more than she can communicate. Of course, she remembers.”
“I’m just asking a question. Besides, how can we know? I mean, after all that she’s been through?”
“I keep telling you, she’s in there. She smiled when you said the word home, so that’s gotta tell you something.”
“OK. Sorry. I just wonder is all.” Just then, the person from the food service arrived to take Rachel’s dinner order. By now, the feeding tube was fully out, and real food was on the plate, not pureed versions. “Do you want salmon and veggie or do you want mac and cheese with a fruit plate?” I asked, looking for an affirmative answer in her eyes. I repeated the choices, and I settled on the salmon as her smile was wider for that choice.
About ten minutes after Jim left to get something for us to eat, Maja came in, singing her signature, “Helloooooooo.” Maja’s bushy, brown curly hair is tucked back in a ponytail, which highlights her young age, as she in her late twenties. Even though she may carry herself as an actress with youthful, showbiz vitality, in reality, her skills as a nurse are of a veteran status.
“Hey, girl. I hear my hubby scored us a pass to go home overnight.”
“Yes!” She handed me a sheet of paper. “I have the paperwork that you need to sign so that can happen.” She went to Rachel’s side, checking her PICC line and swiping her forehead for temp. “Boy this place is not gonna be the same without you, Miss Rachel!”
“Oh, I bet you say that to every patient…”
“Nope, only the ones with Rachel as the name.” She bent down to tap my daughter’s nose, punctuating her point.
“How strange it will be to be home,” I said.
“This is good to do this. It’s sort of like test-driving a car. After being here for so long, you have the chance to see how this new life at home will work.”
“Can’t you move in with us? It might force us to finish the basement and put in a second bathroom. And then you don’t ever have to say goodbye to Rach. Hey, I solved all my problems! What do you say?”
She smiled, but shook her head. “Nope. I gotta help other patients. Nice try, Melissa.”
“Can’t blame a gal for tryin!”
“I don’t! You and Jim are going to be just fine. I know this for a fact. I see how you love her, so I know she’s in good hands.”
“Thanks Maja. You know, for a while, especially back at Children’s, I almost didn’t want to…to touch her. Hold her. She looked so…I don’t know if I know the right word.” I didn’t want to say damaged. Or disabled.
“Well, look at her now. She is smiling. And she looks so much better than she did when she first came here in July. She is getting better.”
“But I have to get better about holding her. Touching her. I miss the girl I could snuggle with. I’m scared that kid is gone.” I felt safe talking about my fears with her.
“Time will heal that. Say, I gotta go check on my other peds. OK?” She turned back to Rachel, singing how she’d be back later.
How about tomorrow? Could the Old Rachel come back once we got home for our overnight? Probably not. Maja’s right. So is Jim. Time will heal her, and I had to believe that Rachel was completely in there.
The next afternoon, Jim and I had our bags packed, and Rachel’s meds and PICC line supplies were in a big, colorful Gillette tote. Rachel was safely ensconced in her wheelchair. We bid the nurses goodbye and made the sojourn west to our home. Driving with Rach in the car was like having a newborn in the car …all over again.
After we scored groceries, we headed home and brought Rachel into our house for the first time since June 11, 2011. She smiled, seemed very at peace, and didn’t fuss a bit. I pulled open the deck door, looking at the lake. “Well, Rach, you said it once before, ‘It’s good to be home.’” She looked at me, beaming, and then started to yawn.
I gingerly put her on the couch, made her comfy, sipped on my beer, and caught the evening news while snuggling with Rachel. Taking a leave of absence from the hospital to rehearse living at home allowed us to take few big leaps closer to that mountaintop marked, “Life after stroke.”
It was heaven.