The rhythm of rehab was a welcome change for us. Speech, physical, and occupational therapies were scheduled each day, providing a more
predictable routine. In addition to the regular therapies, Annie enjoyed time with the art and music therapists. And, every Tuesday evening, the pet therapy team visited…truly a favorite part of the week!
With the emergency phase of Annie’s illness complete, Tom and I had a bit more time to talk and reflect. We marvelled at the sense of calm we often felt, even when Annie’s situation was the most grave. In addition, we had noticed that when one of us was feeling panicked, the other was experiencing strength and steadiness; we had never been completely undone at the same time! We were enormously thankful for this relay of strength.
Although we were often able to console each other, sometimes our human words weren’t enough to ease the pain. One evening, Tom called on his way home from the hospital. He was crying. “I just miss her,” he said, “I want to talk to her and I want her to be well.” Grief had overtaken him, and exhaustion was fueling his distress. I tried to reassure him, but in my heart, I knew my words were woefully inadequate.
Early the next morning, the phone rang again. Tom’s voice was energetic: “Katie…you’ll never believe the dream I had last night! I was sitting with Annie in my dream and she was just chatting away and smiling and laughing. It was the best dream…and it was the best sleep I’ve had since Annie got sick. I feel so rested!” This heaven-sent sweet dream soothed and strengthened Tom when my human words failed.
While the calmer pace of rehab restored some normalcy, our relationship had, necessarily, become quite businesslike. Most of our conversations were focused on reporting information: what the doctors said, how therapy went, instructions for medication, updates on how Bill was doing… In addition, the gravity of Annie’s illness seemed to have sucked the ease and fun out of our marriage. I remember thinking, when Annie was first in the PICU, “Well…I guess that’s it…we’ll probably never ‘date’ ever again…” I couldn’t imagine that laughter or romance would ever fit into our marriage again; Moyamoya disease had seemed to strangle not only Annie’s blood vessels, but those dimensions of our relationship as well.
During Annie’s time in rehab, Tom’s sister, Gingie, flew in from California to help with Bill and visit Annie. After she arrived, she told us that she wouldlike to spend an evening at the hospital so that we could go out for dinner. “You guys have been here all the time; you need a break!” Gingie really understood this; her son, Michael, had spent the first two months of his life in neonatal intensive care. As dinner time approached, Tom and I hesitated…what if something happens and we’re not here? As if she were reading our minds, Gingie directed, “Go on…have fun. I’ll handle this!” We walked to a cozy restaurant close to the hospital, relieved to breathe in its savory smells as we absorbed the peaceful atmosphere. We shared a wood-fired pizza and listened to a live band, the smooth jazz encouraging relaxation. After dinner, we strolled back to the hospital. We took our time. We chatted a little. We held hands. And while we were painfully aware that we hadn’t been able to venture further than a quarter mile from the hospital, it was a necessary first step toward restoring our connection as a couple.
As they days in rehab continued, Annie’s progress astounded the doctors and therapists. We continued to “celebrate subtraction,” but also applauded new and regained skills. Annie was right-handed, and was learning to become a lefty. Her speech was improving slowly, and although it took tremendous planning and effort on her part, she managed the phrase, “I love you,” when she saw Tom one evening. The medical team began talking about a discharge plan, and the word “home” began creeping into conversations.
One morning, I tiptoed out of Annie’s room before 7 am; I wanted to make a card for Katy’s baby shower. Still in my jammies, I gathered some paper and crayons from the play room, and settled into the parents lounge to work on my project. After a bit, I saw Dr. Hertz, our pediatrician in the hallway. I waved and he came into the lounge and sat down.
“We really need to talk,” he said. “It’s time for you and Tom to consider what it’s going to be like to go home.”
The reality of this impending transition created a swirl of emotions: Panic. Grief. Excitement. Terror. Relief. Profound sadness.
“You’re not taking the same child home…she has changed dramatically. This is going to be a huge adjustment for all of you,” he continued.
The tears began falling as I choked, “I’m worried about Bill. How is he going to handle all of this?”
“Dr. Hertz replied, ” Katie, his best friend has changed.”
My soul rebelled against this change, and anger mixed in to the emotional soup.
Dr. Hertz continued, “I want you to know that our practice has been talking about your family a lot,” he said, “And we know you can do this.” His encouragement trickled a few drops of confidence into the drying reservoir of my maternal fortitude.
Still, the idea of leaving the hospital seemed less like a homecoming and more like a hurdle. I was reminded of Betsy’s words, “This is a marathon, and not a sprint.” The next leg of our race was about to begin.
Coming up in Chapter 20: The Wonderful, Terrifying Day We Went Home…and our “New Normal…”