Unexpected Words: Our Family’s Story~Chapter 10

Never before had the phrase “hurry up and wait” made so much sense to us. We quickly learned that “hospital time” contributed to the other-worldly feel of our current circumstances. Periodically, I would glance outside, seeing students from the university heading to class. Their quick, light  steps were a great contrast to the slow, heavy movements that characterized our new existence. We felt trapped in quicksand, as though we were being swallowed rapidly, and our attempts to free ourselves were futile. Frightening terms pressed against us… Tay-Sachs, lupus, infarct, basal ganglia…

The next few days blurred together as doctors from a variety of specialties examined Annie and ordered tests. The primary concern was the bleed in her lung; doctors wondered if this, combined with the bleed in her brain, indicated a systemic issue that would rapidly progress, causing increased damage throughout Annie’s body. During all of this, Annie remained in a coma and on a ventilator.

These were among the darkest days in the hospital for us. And yet, God, knowing our desperation, punctuated these days with  immense comfort. Soon after our meeting in the conference room with Dr. Bass, I was standing in the hallway, reviewing information with the social worker. The elevator door opened and Mark and Anna Lile rushed into the hallway. They wrapped their arms around me and we stood there for a long time. The familiarity of friends, at a time when nothing was familiar, soothed my soul. Later that morning, I looked away from a magazine I was trying to read and saw my sister and brother coming down the hallway into the waiting area. Betsy had quickly organized care for her own children, packed a suitcase and traveled to Cleveland. David, my brother, had cancelled client appointments and left work undone. I marveled at God’s planning, wondering how this quick-assembly of my family could have ever happened had we been in Maryland.

There were practical matters to be managed, of course. Tom, in his even and methodical manner, contacted his new boss to explain our situation. When he returned from his phone call, his countenance was markedly relieved–and surprised. “What’s going on?” I asked.

Tom said, “Well, I told my boss what happened. He was really kind, and very concerned. And then he said, ‘Is there anything I can do for you?’ So, I started listing customers that needed to be called and appointments that needed to be changed, and he interrupted me, saying, ‘Tom, we’ll handle all of that. But is there anything we can do for you personally?'” Tom shook his head in disbelief. “Can you believe that, Katie? He was just concerned about us and our family.” The contrast between this man…truly a man of character…and Tom’s previous work experience amazed us, and filled us with gratitude.

One afternoon, I sat in the waiting room with my mother. “I need to have another baby,” I blurted. As my mind struggled to make sense of our situation, I felt the need to somehow protect Bill, and be certain that he would not be alone. My mother has always been an exceptional “student” of her children, working tirelessly to understand each of us from the time we were in her womb. Her intricate knowledge of my personality, motives and soul allowed her to speak to me in a way no one else could.  Her blue eyes met mine. “Oh, honey. Your world has really been turned upside down. Let’s just handle today.” Her words made the senseless cycling of anxiety cease, if only for a moment.

Later in the week, we learned that the bleed in Annie’s lung had resolved. She was stable enough to have the breathing tube removed, and the doctors carefully woke her up. She was still very sick, and we learned that in addition to the paralysis on her right side and the inability to speak, Annie had also lost the ability to track with her eyes. Her eyes drifted to the left, and she was unable to track objects past the midline. New questions and panic followed from us, along with more waiting and hoping.

I sat alone in the waiting area that day, mulling these new circumstances. My sister joined me. I turned to her in tears and said, “I feel like I’m grieving, and she’s not even dead.” The weight of this emotion, coupled with the guilt that I felt about it, was lightened by sharing it with Betsy. She nodded. “This is a loss, Katie. It’s okay that you feel grief.” Her validation of this feeling gave me immense comfort, and again, I marveled at God’s planning. Betsy was a rehab nurse who had specialized in working with stroke patients–and their families.

Betsy then told me an important truth: “This is a long-term thing, Katie. It’s a marathon, and not a sprint. So, we’re all going to get our running shoes on, and we’re going to run this race with Annie.” I didn’t want to hear that this was long-term. I wanted a quick, easy fix! I had prayed for it! God knew what I wanted, and in this bleak days, He was providing what we needed, like a constant drip of life-giving medicine through an IV. The knowledge that we were surrounded by lots of “runners” buoyed my spirit.

“Okay,” my practical, down-to-business sister announced. “I’m tired of Annie’s hair looking so stringy. Come on, let’s go.” I followed her without question, as I had done for much of my life as a little sister. She headed into the PICU and sought out Annie’s nurse. “I’m Annie’s Aunt Betsy,” she said authoritatively, “and I’m a nurse. I’d like to wash her hair. Can you please show me where I can get a basin?” The nurse, both puzzled by Betsy’s assertiveness, and relieved to have some help, complied, finding Betsy the necessary supplies.

I then watched, with gratitude, as my sister’s capable hands gently cleansed my daughter’s hurting head.

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