Any parent can recount the heightened level of anxiety when bringing home a newborn from the hospital for the first time. Yesterday, I sat in my car for the first time in 2 weeks and felt as if I had quadruplet newborns in my backseat.
10 and 2...double checking mirrors...ensuring blind spots were clear...driving 40 in a 65 - I was that lady on IH35 at 2 pm. I'm sure I was the source of many drivers' angst yesterday afternoon, but their honks made little impact on me or on my cautious driving. I had precious cargo in a five point harness in the backseat headed to a special family homecoming. Festus Drive was calling my name. Home was just a few miles south, and we were ready for it in a big way.
Rewind 24 hours...
You'll find me all but curled in a ball, resisting the idea of leaving the safety of the hospital grounds. I was certain they'd made an epic mistake by planning to discharge us the next afternoon. We weren't ready! I should note, when I say "we" I really mean "I". I wasn't ready...not even a little bit.
Over the course of two weeks, I solidly filled a 70 page notebook with detailed timelines, medication dosages, procedure explanations, scan results, blood work parameters for immunity safety/transfusion necessities, doctor dialogues, and lists of visitors and generous gifts. I had just started my second spiral when the panic began setting in fully. Wait, I've asked hundreds of questions throughout our stay, at least. I posed these questions at all hours of the day and night. What do I do when I have a random question at 3 am and there's not a nurse downstairs in the living room readily available to answer it? Where's the nurse's call button?
The nurses were on to me. They smelled my fear. They sensed my insecurity in my ability to protect and care for our precious boy once off the Dell campus. They noted all of these feelings and came to my rescue with reassurances and pop-quizzes (none of which were actually graded, though I did ask each nurse when quizzed to confirm). They reviewed the hands-on broviac care training we had over the course of 2 nights. They had me remind them of how high Rex's fever would need to be before calling the clinic or hospital (100.5 - I nailed that one). I knew vomiting 3 times in 24 hours could warrant a phone call.
The fact of the matter was...I knew all of the facts they needed me to know in order to be discharged. I could recite my notes verbatim with the spiral tightly shut. The fact of the matter was...we were, in fact, ready. So, when the time came to pack the metal cart with our myriad of accumulated belongings, load the car, and review discharge paperwork with the nurses, there was an absence of that earlier panic. We were ready to go home.
We hugged each nurse - each one who had taken the time to get to know our family and made us feel like we were the only patient on the 4N wing. We hugged the doctor who helped us through the week and gave ample assurances that we were ready and could do this. We hugged the CAs who kept us laughing, kept us grounded, and who took joy in spending time with our Rex and asking all about Elle. We gave the child life specialist a tight squeeze for ensuring Elle was okay and that Rex was entertained during his stay.
I gave an extra long hug to our angel, Martha, who was so loved by her team when the oncology program was in the basement at Brackenridge that they asked her to join them in moving to Dell when it opened. This angel was not only the wing's housekeeper; she was also the woman who, when we returned to the room after dropping off Rex in anesthesia for his surgery, she noticed that I had slumped to the floor in a heap of tears. She came over, sat beside me, and she offered me her rosary beads. She told me to keep them when I tried to tell her I couldn't accept her spiritual gift. I repeated it was too great a gift and she might need them. She just shook her head. She sat with me and smiled; she sat next to me while I wept.
These were the people we were leaving. These were the people who saved our baby, our family, and set us on a winding road towards wellness. These were friends who I didn't grieve leaving, because these were the friends with whom we'll share future nights as we travel down this path. It was never "goodbye". It was always "see you soon". They seemed to know this far before I realized it.
After snapping a quick picture right outside the wing, we gave one last wave and a quick smile and walked away. We didn't look back. We didn't have to, we'd be back soon enough.
Back to the trip home...
When I saw the Shady Hollow neighborhood sign as I drove south on Brodie, a wave of relief washed over me. Home. We are so close. Home. Pulling up to the house, I idled the car for a few minutes, not yet ready to take the plunge. This threshold crossing had great meaning for our family's future. It was the beginning of the "new normal" I referred to the other night.
As Rex slept on in the car, I fumbled for my keys at the bottom of my purse, carried the medicine box, the bag filled with neuroblastoma information and spirals with copious notes, and my purse to the doorstep. Unlocking the door and walking into the house proved easier than I expected. After setting the bags down, I noticed my house, which I anticipated feeling foreign and frightening, felt warm and comforting. It was familiar, safe. It made me smile immediately.
I pulled Rex from the car and carried him in as he slept on my shoulder. One step into the house, his eyes popped open. He looked around, looked back at me, and he smiled. We were home. His once wobbly and unsteady gate was now more confident and steady as he walked around the house, his house, grinning ear to ear.
Casey and Elle arrived shortly after our arrival, and they, too, wore those grins which screamed "WE'RE HOME!". We sat in the tv room and watched the kids play. Casey and I could look at each other and not fear that the other would self-destruct at any point. We smiled a lot. We smiled more than I can remember smiling in a while. I was comforted as I had wondered when I'd ever genuinely smile again after learning the diagnosis two weeks earlier.
We later sat down at the table and ate a delicious dinner prepared by a dear friend. We talked about Elle's day, what was on the agenda at school tomorrow, what hair bow she'd wear with her Rexstrong shirt, and what special area she'd attend. It was a dinner you could have plucked out of a week from any day of the prior month. But onto each word we clung. We really listened to one another. We smiled. We savored not only the tasty meal, but also one another.
We did our typical nightly routine of brushing teeth and reading books. We added in a few new components of broviac flushing and heplocking, medication administering, and mouth swabbing. We tucked our babies into their beds, kissed them goodnight, told them we loved them, and walked downstairs.
There wasn't the tangible silence we'd felt while at the hospital. We talked and laughed. We watched one of the kajillion shows recorded over the two week stretch from the DVR saved list. We had a normal night. It was wonderful.
Who knows if the future transitions home will hold as much drama, panic, excitement, and fear. Who knows. What we do know is that there truly is no place like home. Dorothy hit the nail on the head with that one.
“Home is the nicest word there is.” - Laura Ingalls Wilder