Last Sunday night I packed for the hospital stay. For myself I had one extra outfit, a bag of snacks, 2 coloring books, a packet of favorite markers, 2 novels, a journal, stationary, a devotional, and my cozy strip blanket which I’ve mentioned before. I was sure I’d have so much down time in the next 36 hours that I could finally finish the blanket, probably get at least half way through one novel, and catch up on all my woefully neglected correspondences. For Angelina I packed 4 outfits, some comfort objects, and a whole goody bag of activities, but I figured she’d be sleeping through most of the hospital stay.
The drive down was uneventful and fast thanks to its familiarity; I’ve been making this 2 hour drive down to the hospital once or twice a week for over a month now. When we checked in at pre-op I asked if we could meet the interpret right away (sometimes Angelina takes a while to warm up to people when they surprise her by speaking Ukrainian). The blank faces of the receptionists made my heart sink. While they held a hushed conversation on their side of the desk, I waited, mentally telling myself that this wasn’t a big deal, we’ve done tons of doctor appointments so far without an interpreter, but I was always right there by Angelina’s side, today would be different.
The apologetic receptionist told me that the request had been placed for an interpreter but there simply wasn’t one available in our area. We could try a cell phone interpreter or a video monitor. On the phone Angelina just sits and listens but won’t answer questions, and she assumes that the cell phone in her hand is now hers forever so it gets ugly when the nurse takes the phone away. So I opted for the video monitor. They asked if I wanted to wait until they worked that out or if we wanted to start the pre-op anyway. I wanted to stay on track for Angelina’s sake and for the sake of all the families coming in later today who would feel the ripple effect of a delayed surgery so early in the day.
I’ve got to say this team of pre-op nurses and support staff were incredible. Everyone took meeting Angelina in a stride, they gave her cheerful eye contact, put their hands up for high fives, and spread the word that Angelina definitely knows the phrase “good job” and to say that to her frequently. In the end there was no interpreter available during our entire stay. However there was a service called Child Life, whose entire purpose is to support the child and family through these times in the hospital. Our Child Life gal showed up with a Mary-Poppins-worthy bag filled with play-doh, bubbles, a doll Angelina could color, and a bunch of medical equipment that we could play with.
Over the next two hours Angelina’s face, which had been wary and withdrawn when we first arrived, relaxed into her cheerful self. She loved making balloons out of the hospital gloves, tried to show me how she could wiggle her ears while wearing a medical mask, and even enjoyed taping an iv line to my arm. I asked the anesthesiologist if I could stay in the operating room until Angelina was asleep to make it a less scary transition. The anesthesiologist wasn’t up to that option, but she did make sure Angelina had an oral medication (did they call it “happy juice” or “goofy juice?”–either fits). Its purpose was to help her relax and also probably cause some amnesia so she wouldn’t remember being taken away from me when it was all over. After she was given the happy juice she held my hand and stared at the ceiling, every now and then she’d say “wooooow” in a low voice. When the team rolled her away she waved at everyone like a queen and sang out with “thank you mamaaaaa” as she turned the corner and was gone.
I smiled and waved until she was out of sight, then the smiled dropped. “Dear God, please don’t let her die” I thought. There, I’d thought it, I knew it could happen, but I had not let myself acknowledge the thought until now. She could have some unknown condition that we just don’t know about that could cause unexpected complications and someone could walk out in a couple hours to tell me “I’m sorry” and life would never be the same. Often being a realist really sucks. But on the other hand Angelina has already survived so much, she’s already survived at least two surgeries; she’s survived when other children did not. A passing nurse saw me standing aimlessly in the doorway and asked if she could show me to the waiting room. I followed her out without a word.
It was after noon by this point and I hadn’t had breakfast. Although I didn’t feel hungry, I knew I should eat. I wandered down to the cafe and ordered something (I don’t remember what) and ate it. I watched the gaggles of nursing students chatting about lectures and I thought about how reassuring it is to be the person wearing scrubs rather than the waiting family member.
Not all that long ago (and a lifetime ago) I worked as the department manager and lead occupational therapist at a long term acute care hospital (LTAC). I was one of those scrub-sporting people. My maroon scrubs signified therapy (people knew to hit their morphine buttons as soon as maroon walked into their room) and I reveled in my work. Every morning on the elevator ride up to my floor I’d feel my mind lifting to the challenges of the new day and I’d work with single-minded fervor till the end of the day. I would come home, see my 8 month old daughter for an hour or so before her bedtime, get a load of laundry going, catch up with my husband about the events of the day, and then collapse in bed. I loved my work and honestly I was pretty darn good at it too. I was 25 years old and people enjoyed telling me that the world was my oyster.
A few months into my job I had a review with our CEO (a truly awesome lady) and met the regional somethingorother on a Friday morning. During the course of the conversation they talked about future opportunities within this corporation, possibilities for taking more management courses, climbing ladders, getting into administration, and seeing how far I could go. In the conversation it also came up that neither of these ladies had children. One had a cat. The other joked that she didn’t even own houseplants because she was home so rarely–but she loved to travel the world. I wasn’t sure what to make of all of this. It’s rare to find therapists in administrative positions because we tend to like doing therapy. On the other hand, I imagined the positive impact it would have for my therapy team if I had more say in decisions that directly affected our department.
That afternoon, after the rest of the therapy team had already gone home for the weekend, I was wrapping up a session with my last patient of the day. He was a hard-working man and the world had truly been his oyster. We were chatting about the weekend. My daughter was turning one, we were going to have a little party. I brought over the framed picture I had of her and he cupped it in his large strong hands and took a long, slow intake of breath. His exhale was a tumble of words.
He’d always worked hard to support his family, to provide all the material things he valued, and to build up enough savings in order to retire early and enjoy being a grandfather. He’d put his sons through college, they’d married lovely women, and now he was waiting on the birth of his first grandchild, a little girl. He had been all set to retire early and go on a cruise with his wife for a few months and return home a couple weeks before the due date of his granddaughter. A day before his last day of work he had collapsed from pain, been rushed to the ER and tests came up positive. Cancer.
While reviewing his medical history on the day of his OT evaluation I wondered why he wasn’t on comfort measures, none of the reports gave any hope, yet here he was requesting therapy. His wife was in the room during the evaluation, she fluttered around chatting about the cruise which they could take next year since they missed it this year, and reassuring me over and over that her husband was a fighter, that he’s won everything he’d ever put his mind to, he would beat this cancer. No one in his family had any doubt that he would pull through and live the life he’d been working towards all his life.
For a week he amazed me with his determination. Usually it’s hard to get people to commit to an exercise program while they are laying in a hospital bed, but he’d asked for new stretches, charm the aids into wheeling him down to the therapy room so he could move his arms on the armbike, and had this overpowering can-do attitude. You see a lot of miracles when you work in a LTAC. He seemed like he was ready to be one of them.
But that afternoon in the calm of the therapy floor he stopped fighting. He held the picture of my darling baby girl, a little girl who is the first grandchild for someone else, and he cried. Through his tears he told me his regrets, the regrets I’ve heard oh so many times from so many people. He wished he’d prioritized his family when his kids were young, gone to their games instead of picking up extra hours at work, spent money on memories not possessions, and not counted on health and wealth in later years. With that driving intensity that had carried him through the diagnosis he looked at me and said “Kid, (yes, he did call me kid. it felt like talking to a cowboy from the old movies) I’ve made mistakes, I’ve learned from them but I can’t change them. I’m dying. I’m not going to make it. YOU can learn from my mistakes though, that’s why I’m telling you. You’re young and things are going for you, but you never know what will happen tomorrow. If you can, go home. Be with your family. In the end a career, no matter how great, doesn’t compare.”
That night at home I baked a birthday cake for my one year old daughter. That same night the man left this world forever, one day before the birth of his first grandchild. In death he embraced the same intensity and decisiveness as he had given life, no one realized how quickly he’d go. His family was unprepared for his passing; to the end they all believed he would pull through because he seemed unstoppable. He died with regret, as so many people do, but he used his last day to change the life of someone else – my life.
On Monday morning, before I heard the news of his passing, I took the elevator up to my floor and my mind rose to the challenge of a new day, but there was a new lingering doubt. I had no doubt that being an occupational therapist was a good thing, but was it the best thing I could be doing right now while my daughter took her first steps and said her first words away from her parents? En route to my office I swung by his room ready to show him pictures of the birthday celebration and present to him the pink frosted cupcake I’d saved from the party. I stopped at the doorway. The room was silent with all the signs of prep for a new patient. Someone stopped at my side long enough to give me the update and then they were gone again, swept up into the duties of the day. I turned and stepped into the current as well, there was so much to do.
It was a busy day (Mondays always were) and my mind clipped along enjoying the demands of the job, but for the very first time my heart was not in it. In the afternoon I had some unexpected time on my hands so I took a break, made a cup of tea, cried (every now and then you need a good cry when you work in a setting like that. it keeps you human), and looked around for my heart which was usually lubdubbing right along with my job.
It wasn’t until I came home and picked up my baby that I found my heart again. It was at home, where indeed it had always been. I wrote my resignation letter that very night. Three months passed before I turned it in to my CEO, she glanced over the letter, looked up and asked if I was sure. I explained that I needed to be home, I needed to be a wife and a mother. She nodded and supported my decision without hesitation. “Good for you,” she said, “If I had that option I’d choose it too.” Two weeks later I said goodbye to my team, my floor, my hospital, handed in my maroon scrubs, moved to a different state, and never looked back. Until now.
Sitting in a different hospital drinking a cup of tea and waiting for my daughter to be out of surgery I took the time to look back over the years and think about the choices and changes. Getting to the dregs of my tea brought me back to the present, I wandered back to the waiting room and managed to complete a few rows of the blanket while my mind wandered around old memories. Sooner than expected the surgeon came out to give me the news. Angelina’s surgery had gone incredibly smooth, faster than they anticipated, and she was already waking up in the recovery room. He wrapped up the conversation by telling me that Angelina had less than an inch on her shunt left and that it was truly a miracle her shunt had not failed while she waited for her family.
Over the next 24 hours I hardly touched all the projects I’d brought along. Angelina was hyper-vigilant for the rest of our stay, forcing her eyes open through sheer willpower much to the amazement of the nurses. The nurse in the recovery room assured me Angelina would drift back to sleep for most of the afternoon, but Angelina kept her eyes on me, sometimes propping her eyelids open with her fingers. In the evening after she was finally able to have a meal the unit nurse told me for sure Angelina would sleep now but when the night nurse came in to check on her at midnight she was still wary and awake. By this point narcotics came into the picture with the night nurse telling me that Angelina NEEDED sleep. Over then next 6 hours when the nurse would slip into the room to check on Angelina they’d be met with a pair of groggy eyes that were still fiercely aware. Through it all Angelina clung to my hand. If she started to drift off she would mumble “mama mama mama” and I would whisper “I’m here. I’m right here. Mama’s here.”
At 6am when the resident rounded I asked for Angelina to be discharged as soon as possible. He agreed that as “soon as possible” was a good goal, and that would probably be around 4pm because doctors generally didn’t round until mid-afternoon. I asked if he could at least get the preliminary stuff going for discharge so that everything would be ready after the rounds. He agreed and left, I wandered over to the nurse’ station. A few minutes later I came back with a promise from our nurse to have the PA stop by as soon as she was in the unit. By 8 we had discharge orders. We waited till 10am to leave so that Angelina could have one more round of IV pain meds before we hit the road. I’ll admit it was kind of fun to have a foot in both worlds during those last few hours; I was nudging that discharge right along while also being the one receiving the discharge education.
On the ride home I’d glance in the review mirror to see a pair of owlish eyes staring at the back of my head. When we got home Angelina had a bowl of yogurt and gratefully collapsed in her own bed where she slept for 3 hours. Since then her recovery has been going really well. Her homecoming felt natural, all the family continues to adapt to our new life; we’ve seen no regression in behaviors.
I’m also grateful for that time to think. It’s a good thing we are able to reflect on past decisions and probably also good that we can’t see how present decisions will affect our future. If, on that fateful Friday afternoon 4 years ago, I had been able to catch a glimpse of my humishdrumish days now when I’m often up to my elbows in diapers, I may have chosen the ladder-climbing life instead of the one I have today. I wouldn’t have learned that choosing hardship and fear and pain does not mean choosing regret. Indeed the hardest, scariest, most painful choices in life are often the most worthwhile, the moments in life you won’t regret when you stand at death’s door.