Remembering Emily

We arrived in Osaka, Japan on August 1, 1998. Before long, we began to meet some of the Americans already there. (We were the first of the USJ team to settle there, but other expats were in the area already.) Among the first were members of the US Consulate, including Paul Yeskoo. We were pleased to find they attended the same church we went to. (There was on only one English-speaking Christian church in the area.)

Paul and his wife, Lindsey, had three children: son, Chris, daughter, Emily, and baby Madeleine. Emily, the middle child, was cute, and bright, so sweet.

We were there with them for over two years, and we got to know all of them. My favorite memory of Emily at the time was a weekend in October of 2000 when the entire church decamped to Camp Sengari, a Japanese onsen or hot springs. Larry took his movie camera, and we have film of all the kids running by our cabin laughing together. There is film of everyone eating, playing games, and worshiping. And Emily is in most of them.

A couple of months before we left, the Yeskoos returned to Washington for cultural and language classes before being sent to Shanghai, China.

We returned home shortly thereafter.

About two years later, we heard some disturbing news. Emily was exhibiting some strange behavior. In December of 2002, nine-year-old Emily began to lose mobility. The doctors in China were at a loss to figure out what was happening. So, in March 2003, Emily and Lindsey were medically evacuated back to North America. Emily, now ten-years-old, underwent extensive testing.

The chief pediatric neurologist sadly relayed her diagnosis. Emily was suffering from a rare, fatal disease called MLD, which had in two years almost destroyed the white matter in her brain. No known treatment. No known cure. She was given a prognosis of no more than three years.

Since then, Lindsey has kept all of their friends updated on Emily’s condition through a CaringBridge site: https://www.caringbridge.org/visit/emilyy, where you can read her whole story.

Since Emily’s condition was caused by a recessive gene, her siblings were also tested. Fortunately, they did not have the disease.

The family moved to Toronto, Canada, where Paul was assigned.

Soon, Emily stopped walking, talking, eating. She could do nothing for herself. She remained bedridden and under palliative care. Fortunately, she was able to be at home with Lindsey as her primary caregiver. Despite her limitations, Emily remained aware and responsive.

She came very close to death at least five times. Yet, each time she miraculously recovered. Occasionally, she was able to sit upright in a wheelchair.

Her siblings grew up and moved away. Chris married and is living in Colorado. Madeleine attends college. Through the years, Paul has moved to several posts overseas because of his job. Lindsey and Emily remained in Toronto.

In March of this year, she turned twenty-six—far exceeding all expectations. During the past couple of years, she began art therapy. Her paintings are fabulous. (I hope to work with Lindsey to publish Emily’s art in a book.)

Emily inspired so many people that Emily’s House, the first hospice for children in the world, located in Toronto, was named for her. https://www.emilyshouse.ca/

Last year, Lindsey was awarded the Heroes in the Home Caregiver Recognition Award, from the Central Community Care Access Centre (CCAC).

On Wednesday, I opened Facebook to this post from Lindsey.

The sun rose golden on her still-warm body this morning...but her spirit had been finally set free, released directly from the warmth from my arms to those of the Greatest Eternal CareGiver that ever was. My precious Emily. A beautiful life. A beautiful death, if one can even say that. Our hearts are absolutely broken. But tucked in there is also the immense privilege of having known and loved her and had her as our own (yet not)...and being forever transformed. There is so much more to say. Now is our time of weeping...and her time of leaping…The family is all gathering from various corners of the earth, with the request that our privacy be respected over these coming days. Details will eventually emerge.

I, too, am heartbroken. At the same, I feel so blessed to have had these precious people in my life.