Note to readers: In  my last post,  I had promised a chapter on finding a church family, and that is coming soon;  This chapter will focus on Annie’s transition to school, meeting our kids’ needs as we adjusted to our “new normal,”  and the events leading up to finding our church. As you can probably guess, God’s timing  was (and is!) perfect…

First day of kindergarten!

By September, Annie was sporting a cute pixie haircut which covered her scars. She looked not only adorable, but also “typical.” Although we had been in touch with the school throughout the summer, it was difficult for the staff to understand the nature and severity of her brain injury. Her fine motor and language skills were particularly weak. In addition, some of her behavior raised questions…and eyebrows. She would often get distracted, and sometimes wandered around the classroom during seat work. She was fairly impulsive and unable to complete her work. One afternoon, she failed to line up with her class after recess, accidentally getting in line with another group. She was punished for this, and came home in tears. When I tried to communicate with the teacher about the effects of brain injury on attention and organization, she replied curtly, “You know, Mrs. Wetherbee, it’s quite possible that you’ve been bending the rules for Annie since she’s been sick. She just needs to learn to do what she’s told.”

This indictment of our parenting stung; we had worked so hard to be sure that Annie  wasn’t spoiled in the hospital! We prompted her to say “please” and “thank you” to the medical staff, even when she could barely speak. We even assigned “chores” for her while she was there so that she would maintain a sense of responsibility. I remember thinking, “If I can just get her well enough to go home, then she’ll be in school…and THAT’s the part I know!” As a special education teacher, I felt sure I could be an effective advocate for my daughter. Clearly, the teacher, as well as the principal, did not understand anything I had tried to convey.

I shared my frustration with Dr. Bass at one of our follow-up appointments. Appalled at the teacher’s comments, she asked to attend the next  school meeting. Her presence and expertise lent credibility to our requests, and helped our allies at the school to understand how to help Annie learn. After the meeting, Dr. Bass and I went out for breakfast. While we sipped on coffee, I admitted my feelings of guilt over Annie’s illness. “I should have known. I should have seen the signs that she was struggling. If I had, I could have brought her in and we could have prevented all of this!”  Her dark eyes snapped and she immediately responded, “NO. There wasn’t any way to predict this. If you had brought her to see me before her stroke, even I wouldn’t have predicted it. I’m telling you the truth, ” she said. Her words alleviated the guilt I felt, and I thanked God again for plucking this wonderful doctor out of San Francisco and plunking her into our lives at precisely the right time.

 We weathered that kindergarten year, and enjoyed a fresh start in first grade with a teacher who not only loved her, but prayed for her as well. Annie was becoming stronger as time went on, and her MRIs showed improved circulation to her brain.  As we continued to help her regain lost skills and acquire new ones, we also became more aware of Bill’s needs.  He had some difficulty separating from me, exacerbated by my absence from him during Annie’s hospitalization. Over time, this resolved as he felt more secure, trusting that I would return.  At four years old, he was better able to express his thoughts, and we learned a bit more about his perception of the changes in our family. During an occupational therapy session one day, he sat silently, observing Annie jump into a ball pit and play with enticing toys, all designed to encourage her motor skills. He leaned over and whispered to me, “Mommy? When I’m going to have special needs, too?” From then on,  Bill participated in OT, and he reveled in every activity…because as a sibling of a child with special needs, he did, indeed, have special needs, too.

During this year, Tom and I began talking and praying about finding a church home. The church we had been attending was enormously supportive and caring to us during Annie’s illness. However, we missed belonging to a small group Bible Study, and felt that we needed to find a church with more young families. We discussed this with the pastor, and he encouraged us to find the right fit. “You’re not leaving the Church,” he said, “You’re just

Our friends, Pete and Toni Donoghue

 finding which row of the Vineyard you’re supposed to be tending!” So, with his blessing, we decided to start looking. When I told my sister about this, she said, “You know, you should find out which church that Toni Donoghue attends.” Betsy had met this person at a Bible Study in Michigan.  Toni had moved back to the Cleveland area about a year after we had moved, and Betsy said that she knew Toni was re-joining a church she loved. “Really,” Betsy urged, “You need to visit the church where that Toni Donoghue goes .”

And so we did.

Coming up in Chapter 22: Finding a church family…”Disability Ministry,  1 Corinthians 12 style”

Learning to eat left-handed!

As we approached our discharge date, I felt butterflies in my tummy…from excitement AND nervousness. I was excited to have our  family together again… I wanted to cook dinner, read stories and tuck the kids into bed.  However,  the reality of caring for Annie without a nurse’s station nearby was terrifying.  I doubted my ability to assess  Annie’s medical needs. What if I miss an important symptom? What if she has a seizure in the night? My apprehension mounted, as did my anticipation, forming an avalanche of ambivalence. And, because of this, I felt guilty. What kind of  mother wants to stay in the hospital instead of going home? I chided myself.

My conversation with Dr. Hertz had helped me to face the emotional reality of this transition. I had also begun to consider the practical aspects:  managing the house, the cooking the laundry, caring for Annie and Bill….plus the new responsibilities associated with Annie’s illness. I felt like I suddenly had three children: Annie, Bill, and Moyamoya disease…and that new third child was needy, cranky and daunting.  I knew that I needed to find a solution…and  God knew, too. On afternoon, my aunt, Anne Little, called our hospital room. She and her husband, Bob, had lived near us in Maryland, and we had formed a wonderful bond with them, often sharing holidays or lazy Sunday afternoons together. As we talked, I told her we would be going home soon. She asked, “Honey, what can I do?”

“Well…” I began. “You don’t suppose that you could come here…?”
She didn’t hesitate. “Of course I’ll come!” We made plans, and I promised to be in touch when a definite discharge date was set.

Going home!

The day finally arrived…The doctors and nurses reviewed detailed instructions with us. We gathered prescriptions and insurance documents and packed up the myriad of gifts and cards that we had received during our stay. As we prepared, I began thinking that this home- going was not unlike the day after she was born, when we were bundled into the car less than 24 hours after she had arrived. We’d shook our heads then, saying, “Can you even believe they’re letting us take her home? What do we know about babies?” And now…I couldn’t believe that this group of doctors and nurses believed we were capable of caring for this fragile child.  And yet, they waved goodbye, and off we went…

We arrived home just before dinnertime on a Friday. My parents met us at the house, bearing Bill and a large pizza. Annie, holding Tom’s hand, slowly reacquainted herself with each room, before deciding that she was hungry. I offered a pizza picnic and a video, and she and Bill plopped down on a blanket in front of the TV, giggling and hugging and happily munching pizza. I think it is the prettiest thing I have ever seen.

Anne Little arrived the very next day. She attended to the mundane, necessary tasks that are part of the rhythm of every household…emptying the dishwasher, making the coffee, folding laundry. I felt like I was moving in slow-motion as I acclimated myself to life at home, and I was grateful for her calm, task-oriented nature.  In the evenings, Anne, Tom and I sat in the family room, munching on Cheetos and chatting. Trained as a physical therapist, Anne was also an immense help in teaching me how to strengthen Annie’s motor skills, and helping me to determine what Annie was able to do safely and independently. Anne’s presence  lended familiarity and security to that daunting first week home.

Early Monday morning, we loaded up the car and headed back to the hospital for Annie’s therapy and doctors’ appointments. As we turned right on Adelbert from Cedar Hill, the hospital came into view. From the back seat, Bill piped up, “Look! This is where Mommy lives!” My heart hurt. I had so much reassuring to do, so much trust to rebuild with my tiny boy. He had endured tremendous disruption, without tantrums and with very few tears. “Two year-olds are very forgiving,” a doctor had reminded us. Even so, I knew one

Check up with Dr. Cohen (aka "Big Al")

of our priorities had to be re-establishing normalcy in our family relationships.

Calling our life “normal” didn’t seem quite right, though. We knew at this point that Annie’s recovery–and ours, too–was going to be a long-term process. So, we began referencing our routines as “the new normal.” This helped us to accept the circumstances and move forward, rather than waiting for our old life to return. Certainly, this phrase didn’t vanquish the hurt and loss, but it gave us a fresh perspective.

One afternoon, we were driving home from therapies and enjoying the sunshine. Springtime had arrived, and the air smelled fresh. The kids were quiet; Bill was looking at a book and Annie gazed out the window. She was usually exhausted after therapy, and often fell asleep.  As we turned into our neighborhood, she broke the silence, saying, “I miss God.”

“What do you mean, honey,” I asked, a bit worried by this weighty statement. She struggled to explain, but couldn’t find the right words to tell me her thoughts. Then, suddenly, I remembered my conversation with my friend, Kassi, right before Annie’s surgery. She had told me about a woman who felt so close to God during her illness that she missed His intense presence when she was better.

I took a deep breath. “Annie? Did you feel so close to God while you were in the hospital that you are missing Him now?”

She smiled, satisfied. “Yes,” sighed.

We turned into the driveway. The warmth of the afternoon enveloped us. I unbuckled car seats and gave kisses and snuggles. We went inside, and I started dinner. Tom would be home soon.

It was good to be home.

The rhythm of rehab was a welcome change for us. Speech, physical, and occupational therapies were scheduled each day, providing a more

Physical therapy in the pool with Betsy Hockey!

 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.

Annie's expression is saying, "No, Uncle David...you CAN'T ride my bike. You're silly."

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.

Annie and Aunt Gingie

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…”