In Memory Still Bright

I grew up in a house full of boys—three boys, to be specific. I had two younger brothers and no sisters. When I married Nancy, I also got three sisters-in-law in the bargain. One of these was Laurie.

Laurie was Nancy's oldest sister. For me, she was even more than that. She was really the first person with a serious disability that I got to spend a lot of time with. You see, Laurie was born with Down Syndrome.

I had learned something about such disabilities in my education classes, of course. For example, I'd learned about person-first language, the proper way to refer to someone with a disability. In short, it means identifying the person before identifying the disability (e.g., "a child with Down Syndrome" rather than "a Down Syndrome child"). I'd learned about some of the accommodations that were both available and federally mandated in the educational system. I'd even observed a high school student with a learning disability for a semester.

None of that really prepared me for Laurie.

Nancy told me about her before I met her, so the surprise wasn't total. Still, I didn't really know what to expect. I was nervous, afraid that I'd be uncomfortable around her or that I'd say or do something to upset her or to offend her family. And I didn't know how she'd react to me. I could tell that she meant the world to Nancy, and as Nancy was becoming a bigger part of my life, I didn't want things to go badly between Laurie and myself.

As it turns out, I needn't have worried. It took me a while to get used to her—her habits, her speech patterns, her unusual way of doing certain things. But it didn't take me long to start feeling comfortable around her. She was fairly high-functioning; comparable, perhaps, to a first or second grader. More than that, she was warm, friendly, and affectionate. She took an immediate liking to me, heaven knows just why. And she was funny. She made me laugh in the way that only someone with the earnestness and innocence of a child could do. She made me smile. She was so easy to please, and she took joy in the simplest of things. She was, as Nancy called her, a little ray of sunshine.

Early this morning, that ray of sunshine returned to the heavens that had given her life.

The first part of this is secondhand information, as I wasn't present when it happened. On Sunday, Laurie had told her mother, Rosie, "I think I need to go talk to my father." Her father, of course, would by my father-in-law, Roger, who I've never actually met. He died about three months before Nancy and I met. But Laurie often said things that didn't seem to make a lot of sense, so this bit passed pretty much unnoticed.

Late Sunday night (or early Monday morning, more properly), Rosie woke Laurie up to help her to the bathroom. Laurie gave her mother a hug and a kiss and said, "I love you". She said that a lot, to everyone. But then she said something like, "I'm not gonna make it. I think I'm gonna die." And she collapsed.

Rosie was unable to wake her, so she called the paramedics. They revived her with CPR and took her to the nearest hospital. She experienced another cardiac arrest, was revived again, and was moved to the newest hospital in Salt Lake City, where she was admitted to the Shock and Trauma ICU.

Nancy was in Kentucky this past weekend with her sister Nikki at a scrapbook retreat. I got a call from Nancy Monday night at work. When I saw the number, I figured she was calling me to tell me she was at the airport getting ready to get on the plane. When I answered, I was surprised to hear her crying. She told me Laurie had collapsed and was in the hospital. Things didn't look good, she told me. I was shocked.

I was supposed to pick Nancy up at the airport around 10:30 that night, so I was planning to head home after work and get the place cleaned up a little before she got back. Instead, I headed over the hospital after work, where I found Rosie and many other family members waiting. I got to see Laurie for only a few minutes before the change of shifts, when no visitors are allowed on the floor between 7:00 and 8:30. I joined the family for a quick bite in the cafeteria and a lot of conversation about the situation and possibilities. Then I got to see Laurie for another few minutes before heading home to get a little rest. Nancy's flight was a little late getting in, and we somehow missed each other at the baggage claim area. But once we found each other, we made our way over to the hospital, and Nancy got to see her sweet sister. It wasn't an easy night.

Between the late night and the cold I'd been fighting off for the previous three or four days, I was pretty tired and generally not feeling well when I woke up yesterday. Still, yesterday was Election Day, traditionally the busiest day of the year if you're in the public opinion polling business. So after stopping off to vote, I made my way to work, with the understanding that I'd head to the hospital afterward. Work was a small disaster; our computer-powered dialer was choosing the most inconvenient time possible to go on the fritz. They finally got it to work around 5:00, after which I processed as much information as I could on the three dozen or so temps we'd had helping us out that day. I got to the hospital about 6:15 p.m.

I'd only been in the waiting room for a few minutes when someone came out and told us they needed the whole family in the room right away. Once there, they told us that the medicine they were using to regulate her blood pressure was starting to harm Laurie, and that if they continued to give it to her, she'd probably have another cardiac arrest. Discontinuing the medicine, on the other hand, would likely mean that her blood pressure would start to drop until it fell to unsustainable levels. Phone calls were made to all the out-of-state siblings (in Chicago, Dallas, and Las Vegas) and options were discussed. Rosie made the decision to stop the medications and let nature take its course. Over the next couple of hours, her vital signs fell, eventually settling at minimal levels. Meanwhile, Laurie remained unresponsive to any outside stimuli.

Various friends and family members visited over the next couple of hours, each saying what we now knew to be our final good-byes to Laurie. Just after 11:00 p.m., the doctors and nurses came back in and conducted a short series of tests. These tests confirmed that she no longer had any neurological responses. There was no brain activity any more. So just after midnight, they removed the breathing tubes and turned off the ventilator. At around 12:15 a.m., Laurie drifted quietly and peacefully out of this world, surrounded by the people she loved the most. I was humbled and honored to be included in that company.

Intellectually, I know that Laurie had a good life. Forty-two years is a pretty long life span for someone with Down Syndrome. And they were forty-two good years. She had a lot of friends and a family that loved her and took care of her. Not that she needed that much taking care of, at least in the couple of years that I knew her. She was very self-sufficient and very involved with the world around her. She knew what was going on in her life. She knew she had people who cared about her.

Spiritually, I know Laurie is better off now than she was this time yesterday. In a lot of ways, Laurie's body was a prison. She could never quite do everything that everyone else could do. She had some minor but significant health problems, as people with Down Syndrome often do. And her mind, while comparatively very sharp, was never quite a match for her spirit. Now she's been released from the confines of her earthly body, and her spirit can soar as it was always meant to.

But even knowing these things, it hurts to know that she's gone. As peaceful as it was in that room when she passed, there's still an emptiness that's hard to endure. There's a part of me that can't figure it out. Why does it hurt so much? I didn't even know her for that long, really. But she was family. I know she loved me, and I loved her too. And now that she's gone, I miss her. We all do.

We still have each other, though. And we all know that as much sorrow as we're feeling right now, it's nothing compared to the joy that we've had because Laurie was a part of our lives. She was a blessing to all of us. Everyone's life that she touched was better as a result. The pain will fade, given time, but the love she had for us, and we for her, will be with us forever.

So farewell, my sweet sister. I hope you're enjoying the company of your father, your grandparents, your cousin, and your friends who have gone before. Give them our best. And save a place for us, when our time comes.