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.