A mother of two daughters with disabilities shares how she came to terms with their suffering

Jeanie Oh
Kevin and Jeanie at home in Darvell

Jeanie Oh 1971–

The daughter of a South Korean pastor, Jeanie dreamed of studying special education, but was thwarted by her mother. “Mom was afraid I might fall in love with a disabled man, so I majored in social work instead.”

And then Jeanie and her husband, Kevin, had two disabled children of their own. First came Sarah, whose childhood, Jeanie says, “was an endless round of physical, occupational, speech, and play therapies.”

Two years after Sarah came Sejune, a healthy boy. In 2001, when he was two, the family moved to Darvell, a Bruderhof in England that they had visited several years earlier. Part of what drew them was the ­community’s attitude toward people with disabilities. While some members of their former church had hinted that the Ohs’ daughter was God’s way of punishing them for conceiving her before they were married, Bruderhof members assured them that God is a God of mercy, and that Sarah was not a punishment, but a gift.

Jeanie’s daughter Sarah bikes to work with a friend.

Not that life in the community was all easy: as if learning English and adapting to a completely foreign culture wasn’t enough, Jeanie struggled to accept support when a young woman offered to join their family full time to do housework and care for Sarah.

You might wonder why extra help would be a burden, and in itself, it wasn’t. In fact, I was grateful beyond words. Sejune was eighteen months old and Sarah three, and she couldn’t walk. She was constantly having seizures. But accepting help offended my sense of dignity and hurt my pride. It made me feel that my family was a burden.

Then, in 2002, the Ohs had a second daughter, Serin. Her disabilities were even more severe than her older sister’s. A second young woman was assigned to the family, and then a third, to help with night care.

I was always crying, and Kevin didn’t know what to do with me. He was happy for all the help. I thought he was an idiot. How could he just let go and allow other people to take over our family? I was so conflicted. I asked for advice, and got advice I couldn’t accept. I needed help, but didn’t want it.

Meanwhile, even with all the support we got, I was often at the end of my rope just taking care of the healthy members of my family. I remember Sejune telling me when he was four that he wanted to be blind. I said, “What?” He said, “No one ever notices me. If I were blind, then people would also say hello to me, and not just to Sarah and Serin.” Today he’s a student in London, studying ­physiotherapy.

Then, one evening, I was sitting there wondering why I had two disabled girls – there was no rational explanation – and suddenly, all the tightness in my heart was gone, and I could laugh. I just laughed and laughed – I don’t know why – and I found myself telling God that I was done with being stubborn: that I accepted my girls, and also all the love the community was giving us. I said,

“I surrender.”

Do not think that love, in order to be genuine, has to be extraordinary. What we need is to love without getting tired.
Mother Teresa, founder of the Missionaries of Charity

Over the next years, Jeanie began to see her daughters in a completely new light. They were a gift, not only to her family, but also to the community at large, and most especially to the many young women who came through her house to care for Sarah and Serin, and to be cared for by them. Most of them were just out of high school, doing a gap year before college.

You have to imagine how cool some of these girls were. And then, to see them be changed by Serin, who could hardly talk. The only way they could interact with her was through singing or playing childlike finger games.

And Sarah – she is very sensitive and perceptive. She kept asking this one person, “What’s up? Something is wrong. You need to talk with someone.” Which turned out to be true.

Sarah has a simple, childlike faith. One time she told a caregiver, a rebellious young woman who was not the happiest character, “You need to find Jesus. You need to get baptized.” A few months later, that young woman had a conversion, and did. 

Serin, captivated by an ingenious marble chute

In the meantime, Jeanie was expecting a fourth child, and agonizing over the prospect of another one with disabilities. At a members’ meeting one night, she and Kevin broke down as they shared their anxieties. Other people were in tears too, she says. Then one person after another got up and assured the Ohs that it would make no difference whether they had a typical child, or another one with disabilities. Their child “would be welcome, no matter what.”

“They said, ‘Your children are our children,’” Jeanie remembers. “The love was amazing.” As it happened, the child was a perfectly healthy boy, Seroo.

Looking back, Jeanie says that her journey so far has been “like a snail trail.”

Everything always moves so slowly in our house, and that sometimes hurts. While their classmates are going off to high school or college, my girls are having another seizure or healing from another fall.

Sometimes I lose my peace. At times, I can hardly pray anymore. Then Kevin helps me by pointing out all the things we can be grateful for. Mostly he doesn’t preach, though, because he knows I can’t take sermons! One time – I’ll never forget it – he just said, “Look, Jeanie, our girls can smile at us even after the most terrible seizures. Their rooms must be filled with angels. What more do you want than that?”

Sarah and Serin, who call themselves The Marigolds, are counted on to stack serving bowls and cups for the community mealtimes.

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