Joy in the Journey

The alder trees along the coastline were just beginning to show a hint of autumn color when I took my daughter on her first ferry boat ride across Puget Sound. She held the railing, her sparse baby hair blowing in the salty breeze. We were traveling from our home on the peninsula to the big city of Seattle for her first appointment with the pediatric gastroenterologist, or the liver doctor as Cholita calls her. I didn't realize at the time how much a part of our lives those ferry boat rides would become or how well we'd get to know "the liver doctor".

Far East meet Northwest. The first of many ferry boat rides

And who would have guessed that these trips full of blood tests and waiting rooms and exams would be looked forward to with gleeful anticipation by my daughter? To her, they're the ultimate mommy-daughter date and her obvious joy in them has caused jealousy to creep into the ranks at home. "She's so lucky," pouts her eight year-old sister. "She gets to go to Seattle while I'm at school and she gets a milkshake!" Ahh, the blessings of a chronic illness.

But I'll admit that I too have savored this time with my baby. She makes it easy, rolling up her sleeve for the blood draws, and giggling, "that tickles!" when the doctor feels her liver. And yes, the milkshakes at Burger Master make up for a lot.

The obligatory photo on deck with the Seattle skyline in the distance

But some ferry boat rides have been harder than others. My husband came with us nine months ago when Cholita was scheduled for her first shot of interferon. I'd planned carefully for the trip, packing everything she might need: Tylenol for the fever she'd get after the shot, her blankie for comfort, and books to distract her from the side effects of the medication. I planned so well that we got on the ferry boat without the cooler of interferon sitting at home on our counter. I was nearly in tears telling the ferry boat worker that my daughter was starting a year-long medical treatment that day, a difficult medical treatment, and that she had an appointment at Children's Hospital in Seattle and I needed to get back home. It all came out in a flood, an emotional torrent laid at the feet of a complete stranger in a fluorescent safety vest. She hugged me, and then jumped into action. We'd just gotten to Seattle and she directed the cars around us and then helped us get turned around so we could be the first car off on the way home. "The trip is on us," she said. "And when you come back through, just tell them at the booth that you talked to me and you'll be the lead car off the ferry once we get back to Seattle." Then she rubbed Cholita's back and said, "Bless you, little one." Her kindness rendered me speechless and I could only nod.

Day one of interferon treatment, before we realized we'd forgotten...ummm... oh yeah, the interferon

Cholita now finds that the upside of treatment is that she gets to take more ferry boat rides. More milkshakes, more uninterrupted mom time. She loves her doctor. She bats her eyes at the nurses who give the best stickers. She's named several fish in the waiting room fish tank. She knows that on doctor appointment days, if she asks for french fries with her milkshake, she'll probably get them. And she knows that her family adores her. I can't take away her illness; it will most likely always be with her. But we can put on a smile, breathe in the salt air, drink a milkshake, and find joy in the journey.