When her daughter Jill was born six years ago, Michele Cornell wanted to stay home with the new baby and her 3-year-old son.

She retired from her previous careers of working in real estate, at Purdue University Computer Science Department and Avon to be more available for her children. She wanted time to watch them grow up at their baseball games and through other childhood activities. But as she began playing with her children, she started falling and her speech began to slur. An unexpected fall while carrying her 9-month-old daughter in February 1997 led doctors to believe 30-year-old Michele might have ALS, amyotrophic lateral sclerosis, a progressive neurodegenerative disease with no cure and short life expectancy. Now, beautiful red-haired 35-year-old Michele can barely move without someone assisting her. The disease traps a healthy mind in a deteriorating body. If Michele can gather the strength to venture from her home, she watches her children's baseball games from the family van and she sits in the back at church so there is room for her electric chair. She also struggles to communicate with her children about what they are learning in school.

"I still have the same urge to run to my kids when they are hurt, but I have to sit and watch others kiss their boo-boos," said Michele in an e-mail, because her speech is so slurred.

Today is Mother's Day, a day when children honor their moms for all of the sacrifices they've made. Every day of Michele's life is cherished, not only by her children and husband, Scott, but by the hundreds of people who have come to know this inspirational lady at church and in the community.

As her body has wasted away, her spirit and faith have grown. She's touched many people, even though her crumpled hands may not allow her to volunteer in the community or bake things for her kids as a room parent at Cumberland Elementary School.

Since Michele became a member of Covenant Presbyterian Church in West Lafayette, senior pastor David Henderson has watched his congregation flock to help the family. People have stepped forward to clean their house, take the children to their activities and meet family financial needs.

"People feel blessed to help," said Scott, who is overwhelmed by the support his family has seen for almost four years.

At first, the Cornell family was hesitant to accept such generosity when people tried to bring meals.

"We want to thank them, but we didn't know how to thank them," Scott said.
Finally, Christie Keen, who at the time was Samaritan service deacon at Covenant, pleaded with the family to accept meals, because the church had been flooded with calls from people who wanted to help.

Keen had known Michele since she was an Avon lady. Michele used to read the Avon catalogue over the phone to Keen, who is blind. Two years later, Keen is still maintaining the monthly dinner schedule that has 20 families, some from church and others friends of the family, who bring meals to the family four days out of the week.

"With this illness she is facing, Michele's life could be getting smaller and smaller and more bitter," Henderson said. "She could be allowing this to be the thing that defines her, but instead, because of her faith her life has only gotten bigger and it takes in more and more people. Her concern is for others, not for herself, and that is powerful evidence of God in her life."

First symptoms

Michele's physical problems first became evident when her speech began to slur and her muscles started twitching. Then doors felt heavier to open and water faucet knobs were a struggle to turn.

"One night I was being silly with the kids," Michele said. "I jumped up, lost my balance and fell backwards headfirst into the entertainment center. I gave myself a mild concussion. I knew something was terribly wrong."

Then the doctors appointments, tests and fear began to roll in ... a spinal tap, 4 MRIs and 16 neurologist visits in just a couple of months. She prayed it wasn't ALS. Even though specialists at IUPUI Medical Center told her it was most likely ALS, she still was hopeful it could be anything else.

Almost two years later, Michele's parents drove her to Wisconsin to see Dr. Benjamin Brooks, a leading doctor in ALS. He told Michele she had ALS with a life expectancy of three to five years. At the time Ben was 6 and Jill was 3.

"When Dr. Brooks said, 'You have ALS,' I died," Michele said. "I felt my hopes and dreams vanish. I suddenly had no future. I felt very cold and very alone. I felt myself slip into the blackness of hopelessness. My body started retching and convulsing and I cried uncontrollably. I believe I experienced the coldest and blackest place a human mind can go to."

When she returned to West Lafayette, all Michele could do was hug her kids and cry. Scott brought home sermons on biblical hope that their pastors had shared at Covenant church.

"I decided to listen to them after four days of not sleeping or eating," Michele said. "As I listened to the tapes I realized I needed Jesus because he could give me what the world couldn't ... hope. I began praying earnestly for Jesus to enter my life. Immediately, I felt a peace enter me that has only gotten stronger as time passes."

Michele started reading the Bible during physical therapy, because her therapist was so inspirational and a devout Christian. She wanted to know the source of her therapist's strength and peace.

"In all the uncertainty of our situation, Scott and I began searching for an anchor," Michele said. "We started attending various churches looking for one that felt right. We picked Covenant Presbyterian because of the clarity in which they presented God's word."

Scott and Michele, who didn't attend church while growing up, were baptized on Nov. 15, 1998. The following summer Michele started learning about HTML to create her own Web site, www.meetmyfriend.com, about her relationship with Jesus and living with ALS.

"I think that Michele is one of the most beautiful people I know because of the beauty God has formed inside her," Henderson said. "Scott is so patient with the circumstances they have been handed and he is so constant in his love and care for her. It's a very moving thing to watch."

Life at home

Scott helps his wife get ready every morning. After she eats breakfast, Scott places Michele in her lift chair and hands her the Bible. Michele reads and prays all morning until Scott comes home during the lunch hour. Michele needs help adjusting her body regularly, because sitting in one position makes her hips sore, but her body is too weak to move. Even when sleeping, Michele has to awake to move.

Sometimes Scott goes back to work after the kids and Michele go to sleep to make up the hours he lost during the day.

"We try to be pretty normal," said Scott, who works at State Farm. "I know she'd do the same for me."

Michele is not lonely during the day. In addition to the comfort Christ and God provide her, people are in and out of the house regularly.

When Scott comes home for lunch or from work at the end of the day, he often finds fresh brownies on the table, flowers planted in the front yard, the table set or neatly folded laundry on the couch - all compliments of other congregation members and family friends who have passed through to see Michele.

"At first I didn't want anybody folding or washing underwear," Scott said. "But I got over that. When it comes to Michele's friends you can't fuss with them, if they are coming in to fold laundry, they are going to do it."

The kids are getting good with folding laundry, and they are learning to wash dishes, which can be a little messy.

Ben and Jill realize their mom is different than other moms. Ben, who is exceptionally kind-hearted, is used to many of his classmates knowing his favorite foods because their parents make his family dinner. Blond-haired, blue-eyed Jill is an exceptional reader for a kindergartner. Reading is a pastime Michele and Jill have shared.

Neither of the kids can understand their mom perfectly. "I love you" is somewhat comprehensible, but that's more so because of the way Michele says it. There are times when Ben and Jill can't understand her, then they flee into the other room to cry or play a video game. Michele cannot follow them.

"It hurts her because she thinks they're trying to get away from her," Scott said. "It's sad, but she knows why."

Even though she must be in a chair or her scooter, Michele still has an active part in motherhood. She purchases clothes for the kids on the Internet, and her friends help her photograph the kids' old things to sell on eBay.

Michele stays active on the computer and has a computer augmented speaking device she can use when she can control her hands. The disease has ravaged her body, but not her mind.

"This is so sad because we know Michele is dying," Scott said. "Every week is getting harder for her to eat, sleep, to be understood, even harder for her to breathe. She will eventually not be able to breathe as the muscles which support her lungs will waste and die.

"ALS has made us squeeze the most life out of each day," Scott said. "Our lives have never been more fulfilling. We don't have time to fuss and worry over the stuff we used to. It is very puzzling how things can be so wonderful and so sad, all at the same time."

Michele doesn't know at what age she won't be able to be with her children anymore. The Cornells' life is about living and savoring every day, but there is also the agonizing wait of Michele losing more control of her body.

"It's been so obvious from the start, how deeply she loves her children," Henderson said. "Her role as their mom understandably, that's the place more than any other place, where the reality of a terminal illness has caused the greatest loss in her heart. As she is going through this slow process of failing physically, her thoughts are for family, and I think two things have allowed her to accept her changed role as a mom. This is a place of trusting God so deeply that she really is confident that he has their best interests at heart. She has seen in practical ways how God's love has been fleshed out through the hands and feet through people at church. When the day comes she is not here she knows others will be here for her family."

Copyright © 2002 LexisNexis, a division of Reed Elsevier Inc. All rights reserved.