As Olivia weakened and her light began to fade after her last hospitalization, I found I couldn’t sleep or eat. I went five days without sleep and hardly ate anything. It felt like I was living in a nightmare, and even church seemed a ludicrous burlesque. We felt no sense of belonging or love in the church we’d been attending for the past year, no community, no warmth. But everything in our world was colored by having a dying child, and perhaps we weren’t being fair to that community of believers. It certainly didn’t seem fair that everyone else could go about their normal, everyday lives while our child died by degrees. A terrible tension hung over everyone in the family and especially our Olivia as we awaited the inevitable.
Our new pastor seemed a judgmental, hard man who was not a person we would trust on his best day, much less during our worst ones. So I met with the pastor of our old church, a dignified, caring man who listened to me talk about our plans for Olivia’s death without judging. We asked him to eulogize her, but after listening to what we hoped for, he suggested that I should plan and speak at her memorial service instead. “You combine a formidable intellect with a profound faith and eloquent speech,” he said, “and you’ll do her justice.” It seemed ironic that I would receive one of the best compliments of my life from someone I so respected during a time that had to be the worst of my life. My “formidable intellect” was doing nothing to help me, I thought wryly. I couldn’t even remember what I was supposed to be doing from hour to hour as I went through each long, hot day that long summer.
One of our dearest friends, Anna, was married that month, and even on that happiest of days, we all had nerves about Olivia’s health. She barely ate at the reception and when asked if she was OK, she began crying. I observed, “You don’t seem to be your usual self,” and she replied that she wasn’t feeling well, and was afraid of dying. She said she’d gone to bed the night before, afraid that she would die during the night.
“That’s scary. What did you do?” I asked.
“I prayed and I talked to God about it,” she replied.
When I asked if she’d gotten any answer from him, she said “Yes, he said to me ‘don’t be afraid, it’s going to be OK.'”
And so we talked about dying as people whirled by on the dance floor and Olivia toyed with her cake. She wanted to know who would take care of her in heaven, and where she would live. I was stunned, because I’d never even thought about such things. I’m an adult, and nobody has to care for me; when I think of passing over into the next life, I think of going as an adult goes into any new adventure. Not so with Olivia, who was only a child, and had been cared for her entire life by loving parents. She could only see herself as a 12-year-old, half grown and incapable of caring for herself. Where would she live? Who would tuck her into bed and prepare her meals? Who would remind her to take her vitamins and take her to school or appointments? Who would regard her with pride, or love, or deep affection, and laugh heartily at her jokes?
Suddenly, the idea of telling her that Jesus and her great-grandmothers (all of them) and her ancestors would meet her as she entered heaven seemed meaningless, because only the idea of being met by one’s own parents and all those loved ones familiar to her would be adequate to help her make this transition from one world to another. I had no sensible answers for her, for suddenly I could see her problem. Still a concrete child, she wasn’t able to romanticize seeing Jesus or the angels or anyone else. She wanted her Mom and her Dad there with her, just as we had been as long as she could remember, holding her hand and helping her through the rough times. Who would go with her as she passed on? What meaningful words could I say to help her?
As the realization of our different perspectives hit me, I considered my words carefully. I didn’t want to scare her, but neither did I want to lie to her or romanticize anything. She expected the best and the truth from her mother, and I couldn’t let her down now. “I’ll have to think about this, honey; you bring up some good points. I don’t have an answer for you right now. But let’s pray and ask God to help, and to give you pictures of what you need to help you. I know He’ll do that for you.”
And so we prayed, and we asked God for help. Afterward, we talked about school. The start of school was only three weeks away, and she wanted to go so she could see her friends. I asked if she thought she’d be returning to school, but she replied sadly, “No, I don’t think I’m going to make it that long.” That day, we were sitting at a wedding reception, talking about her death over a partially-eaten piece of wedding cake. She was telling me that in three weeks, she’d be gone. Does a dying child know these things? How surreal it was, and how sweet the cake tasted in this bitterest of moments.
A few days later, Olivia greeted me in the morning with a joyful smile. “Mom! Guess what?” she exclaimed. “I’m not afraid any more! I had a dream and I saw what it was gonna be like over there, and I’m not afraid any more!”
She’d dreamed that she was standing on the top of the world, on a mountain peak that looked down over a beautiful world of rolling, green hills, rollicking rivers and gurgling brooks. Some was forested, some not; a clear, blue sky covered everything. “I saw a town down below, so I started running,” she explained, “and Silvie [our dog] was with me. We ran down the mountain and there were flowers along the way, and I could run so fast. My feet never touched the ground.” Her eyes sparkled as she told me her dream, for she had never walked a day in her life. Tears sprang to my eyes as I imagined her running.
“I went down to the town, and right outside town I saw Tara and Elizabeth [her best friends], and Tara could walk, too, and we started running into town. We were all normal, mom, like everyone else! We were normal and we saw a mall, and we went shopping. We saw stores and we went into them, and we walked all around the mall, and we ate ice cream cones along the way. Afterward, when we went outside, the whole world was still beautiful and sounded twinkly and sparkly, like fairy bells were playing. And that was my dream. And I’m not afraid any more.”
Olivia’s friends, like her, all had ‘special needs,’ and were special ed kids. Like Olivia, Tara used a wheelchair and had never walked; Elizabeth had Down’s Syndrome and until that day, Olivia hadn’t had much to say about being different from other children, nor had she ever made comparisons. She was happy in her own skin all the time, and had a sense of humor far more sophisticated than her IQ tests said she ought to have been. Once, when she asked if she could answer the front door after the doorbell rang, I joked, “Sure, just don’t run in the house.” As she wheeled herself toward the door she cocked an eyebrow in my direction and agreed, “Yeah, I might break a leg, and then I couldn’t walk!”
And so God answered my daughter’s prayers, and out of the depths of the place where dreams grow, she dreamed a dream of beauty, wholeness, and friendship. We learned that there are malls where she was going, and dogs and best friends, and that people float along like hovercraft, and that there’s ice cream. Our daughter needed no white-robed Jesus to greet her and no fancy theology or doctrine to help her cross over from one life into another. She only needed what she was given, and she was fine.
“But, mom, one more thing,” she said, after we had sat companionably for awhile.
“What’s that?” I asked.
“I want you to stay with me the whole time, OK?”
“The whole time you’re sick?”
“Yes, the whole time. I want you to stay with me and not leave me, OK?”
“OK, I’ll stay with you and not leave you. I’ll go with you as far as I can go, OK?”
“Yes, I promise. But just one more thing, Olivia.”
“What if I have to go pee?” And we laughed.
Later on, I felt I might have a panic attack, thinking about the promise I had made. I had no idea what I was promising, how long it would take her to die, how many days or weeks. I didn’t know how I would be able to manage my other children, or deal with anything that would happen outside Olivia’s room, the room she would die in. I had promised what any mother or father would promise, which was to mother her until the very end, to fulfill the race I had to run as a mother, regardless of the obstacles or cost. Though I doubted my own ability to hold up emotionally and mentally, I intended to go all the way with her. I feared with as much fear as a body can hold that I’d let my daughter down by not being able to hold up under my own terror or pain, that somehow I’d drown in it. But Psalm 42 was a comfort to me, which says, “Deep calls to deep at the sound of Thy waterfalls; All Thy breakers and Thy waves have rolled over me. The LORD will command His lovingkindness in the daytime; And His song will be with me in the night, A prayer to the God of my life.”
Until that time, I had never felt totally overwhelmed in any circumstance, except possibly at moments by childbirth, where the outcome is expected to be a happy one–and always was for me. This labor of the heart was one ending in terrific loss for us, and a leap into an unknown world for our daughter. This was the darkest of all nights we could have imagined before then. And yet His song was there with us in the night, a prayer to the God of our life.