Watching Emily stare at Lucy was like standing in sunshine. For Emily, there was no other world than Lucy. That summer we had a new swing set on the other side of the yard from the one I’d built for Emily, a light tan one with benches and a roof to offer some shade. We brought Emily and Lucy to the bench swing that Kari had made cozy with pillows as she had anticipated Emily’s need for privacy. Nestled there together, Emily and Lucy got to know each other. As people left, they’d visit the swing on their way out to bid their goodbyes.
Emily had been sleeping with us since she came home from the hospital because it was just easier. If we needed to take her temperature or her legs were hurting, we were right there. When Lucy arrived, Emily didn’t want to sleep in our bed anymore. She wanted to be alone with Lucy.
Emily was very interested in the routine of caring for a puppy. She asked all sorts of questions about what was going to happen to Lucy at the vet’s office because she had a lot of experience with doctors. She also asked the vet about feeding Lucy and exercise. The doctor gave her a chart to fill out when she weighed Lucy each week. She even trained Lucy how to step on the scale. Lucy was always up to something, chewing strings, buttons, toes, Polly Pocket shoes—almost anything she found on the floor. Emily was always prying Lucy’s mouth open to rescue what she had stashed inside.
We all love Lucy! Emily still carries her around like a baby and Lucy is just fine with that because she likes to be held and cuddled. When we first got her she was a little hesitant and scared, but now she loves to explore and play. She chews EVERYTHING. Her favorite thing to chew on is toes, which Emily thinks is pretty funny. Lucy also goes crazy when she hears newspaper being crinkled, which makes Emily giggle really hard. Emily couldn’t wait to tell all the nurses and doctors that she has a new puppy. It’s been wonderful for her and also good for us… gives us all something else to focus on!
—Kari’s journal
August 12, 2010
Emily was excited about starting kindergarten, so Kari and I hadn’t told her we weren’t sure whether this was a good idea. If she started, she was sure to miss a lot of class, but since she was already reading, we didn’t think she would fall behind. We were more concerned about all the germs she’d be exposed to when she was surrounded by other kids. Plus being out on her own took a lot of energy, and we weren’t sure she had enough to last the whole day at school. We decided that trying to make life as normal as possible for her was the best decision.
We worked with the school nurse to ensure that Emily could come in to have her temperature taken at the nurse’s office each day at lunch. We talked to her kindergarten teacher about keeping an eye on Emily in case she started to look tired or unfocused in class, because it might be a sign that she was getting sick. Once we were feeling more confident about the great support she was going to receive at school, we talked to Emily about using hand sanitizer, washing her hands, and doing what she could not to catch any stray colds that might be moving through the children in her kindergarten class.
A few weeks before school started, I took Emily to camp one day with Lucy beside her in the backseat. Lucy was very excited to be going to camp, racing all over the seat to look out the windows, and Emily was laughing at how animated Lucy was.
When we got to camp, Emily was eager to get out of the SUV, following Lucy. I brought out the wheelchair, but Emily was already taking steps. She was slow, but she was walking. They walked down to the edge of the creek. I brought out the fishing gear and set us up to fish. Lucy raced back and forth for a while, but soon she calmed down as we cast our lines, reeled them back, and talked about school starting and getting into a regular routine.
When we were done fishing, I helped Emily back into the SUV. This day was pretty close to the way we spent time before Emily got sick. We cranked the windows down to get fresh air and I looked at Emily in the back, Lucy nestled in her lap and her eyes closed, enjoying the warmth of Lucy and the breeze. As we picked up speed on the main road, I saw some strands of her hair—just a few—swooshing away out the window and into the summer air.
Chapter 8
THON
It looks like Emily is going to lose her hair after all. She’s lost about half of what she had just over the last few days and there is hair everywhere! When she wakes up in the morning the pillow is covered and when you run a brush through it, it just comes out in clumps. She doesn’t seem upset by it at all and even laughs when she sees how much is coming out. She’s collecting it in a baggy, which she actually thinks is kind of fun. The side of her head is pretty much bald but the top is still long enough to cover the sides (almost looks like a long mohawk!) so as long as we comb her hair straight down it still covers most of the bald spots but it looks very thin.
—Kari’s journal
October 24, 2010
That moment when I saw Emily’s hair flying out the window as we drove home from camp I worried that Emily would be upset, but she surprised us. Sometimes
