After Dr. Cohen’s initial visit with us, we felt as though someone had hit a “fast forward” button. Annie was assessed by the surgery team, we met with anesthesiologist, and several more scans and pre-op tests were ordered. In addition, the nurse drew a unit of Annie’s blood to be saved in case she needed a transfusion during the surgery.

We explained this flurry of activity to Annie in a straightforward, simple way. “Remember that we told you about the bump  inside of your head, called a stroke? Well, the doctors are going to help it get better by using an operation.” When we told her, her brown eyes widened with fear, and she began to cry. We held her and told her we loved her, willing our own fears away as we comforted her. Still, there was no way to ignore the mounting anxiety as we approached the surgery.

Corinne, Dr. Cohen’s nurse, spent additional time with us, explaining the plans for the day of surgery. One of us would be allowed to go into the operating room with Annie until she fell asleep. We would then return to the PICU waiting room. A nurse from the surgery team would call the PICU phone every two hours to update us on the surgery. Because anesthesia can present some risks for patients with Moyamoya, it was possible that only one side of Annie’s head would be repaired, and another surgery would need to be scheduled. Corinne also told us that if Annie was having difficulty recovering, she would remain on the ventilator after surgery.

Finally, Corinne broke the news that I had feared: Annie’s head would be shaved. For some reason, this was the most distressing aspect of the surgery for me; it seemed so invasive and personal. She’d lost her speech, her strength…now her hair?  Inside, I raged, “This disease is erasing my daughter!”  We explained this part of the surgery to Annie, and she was quite teary. She recovered quickly, though, with the reassurance that her hair would grow back …”unlike Daddy’s,” we told her! She smiled and patted his head.

When I called my sister that afternoon, I broke down.  “They’re… going to… shave… her hair, Betsy!”  The sobs wracked my body, and I was embarrassed that this was the issue on which I was stuck.”Oh, Katie,” her voice kind and soothing. “I know that’s upsetting. But you know what? I’m going to buy her a hat…a really cute hat and I’m going to bring it for Easter!”  And I recovered…not quite as quickly as Annie…but knowing that Betsy would be with us, bearing a hat, made this impending indignity easier to endure.

The day before the surgery, Bill came to visit and play with Annie. As soon as he entered the room, Annie sat up and said, “HI, Buddy!” This was the first phrase she had spoken since her stroke. As Bill settled next to her on the bed, the two of them busily played with their toys. Seeing them together was a tremendous comfort, as it brought a familiar, happy dynamic back into our lives. We marveled at Bill’s ability to draw more and more out of her. I mentioned this to Kassi when she called. “That’s AMAZING!” Kassi enthused. “That’s THREE syllables…HI Bud-dy!” she counted out gleefully. I told her that I was also amazed at Annie’s calm acceptance of the situation at this point. Kassi told me about a friend of hers who had undergone cancer treatment, and reported an amazing closeness to God during that time,. Kassi explained that this closeness allowed  her friend to feel calm because she felt God’s presence and care in an exceptionally strong way. “Maybe this is what Annie is experiencing,” Kassi said, “and she just can’t tell us yet.” 

When the morning of the surgery arrived, Tom and I spent some time with Annie early in the morning. This was a day when “hospital time” moved quickly…almost too quickly. I wanted to slow the process, hold her back from this next necessary step. I donned a surgical gown and hat, and went into the operating room with Annie. They had already given her some medicine to make her drowsy, and she was relaxed as I held her hand and hugged her. Her tiny body lay on the table and she held her beloved bear. After the anesthesiologist gave her more medicine, she quickly dropped into a deep sleep. I looked the surgical team in the eyes. “Please. Take care of my daughter. Please.” The nurse hugged me and assured me that they would. Then she said, “What is this?” She pointed at Annie’s gown. On it, we had taped a note, along with a Bible verse we had chosen, written on the back of an envelope:

And then, we waited.