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  A mom with ALS offers advice from the heart
Posted May 10, 2004 in PALS Profiles

BY KAREN SHIDELER
The Wichita Eagle

Today, Pamela Rayer will open the Mother's Day gifts from her four daughters -- a photo of her and her husband, Randy, taken by Tiffany, 21; a letter from Crystal, 17; a painting by Ashley, 15; and a plate designed by April, 11.

Then, they'll all sit down with her gifts to them -- scrapbooks of love, embossed with their names, filled with pages of family photos and the words she might not be there to say in person:

Never be too proud to say "I'm sorry."

Make time for friends.

When your children want to talk, stop what you're doing, sit down and listen.

Get a good cookbook.

The wait for an answer from God can seem like an eternity.

That last bit of advice is one she has learned by heart.

In January 2001, Rayer learned that the weakness in her hands and the shakiness of her writing was amyotrophic lateral sclerosis, usually known as ALS, or Lou Gehrig's disease.

In ALS, the nerves degenerate, die and cause muscles to weaken and atrophy. The disease is progressive and fatal, on average within three to five years.

Rayer, 43, is convinced that God will heal her, though "he's tarried quite a bit," she said with a gentle smile.

But as her muscles weaken, her faith, family and friends have kept her strong enough to carry through with the goals she set for herself when her disease was diagnosed.

She wanted to ski one more time, to ride a horse one more time, to go on family trips, to throw a surprise party for her parents' 50th anniversary and, finally, to make the books for her daughters.

"So I can relax now," she said.

The scrapbooks are titled "My Mother's Memoirs: Advice for the Journey." Life is like a long road trip, Rayer writes, "only on this trip, there are not too many road markers or directions."

The books' pages provide a map of sorts.

They came together with the help of 10 women who didn't want any recognition but who responded when Rayer told them what she wanted to do during a Bible study group in November.

None had ever scrapbooked. But they helped Rayer select pictures and text. They typed captions and Bible verses, contributed their own advice, trimmed mats and arranged pictures.

They put together a second book, too, a cookbook of 22 Rayer family favorites plus their own recipes, so that each Rayer girl has two Mother's Day heirlooms.

The scrapbooks are divided into four parts: spirituality; love and marriage; parenting; and home, family and friends. Each begins with a letter from Rayer.

The letters remind them of their roots -- the summer "when Daddy ate the live goldfish" during vacation Bible school; the way a young Tiffany covered herself with cheese dip; the death of their puppy.

She tells them what to look for in a man: "It's hard to know when you are in love, but there are key elements to look for in your man." A relationship with God and ambition are two.

She pairs a picture of herself as a Mrs. Kansas contestant in the late '80s, a contest she was afraid to enter, with Philippians 4:13: "I can do all things in him who strengthens me."

She couples advice to go easy on wedding spending with a picture of her in the $20 wedding dress and 89-cent shoes she found at a Goodwill store. She splurged on a $60 veil.

Randy Rayer has his own letter to the girls in the book, and the women who helped contribute advice on topics from breast-feeding to spiritual nourishment to cleaning mini-blinds. Pictures show the girls in their Halloween costumes, on Easter Sundays and on family vacations.

Looking at a photo of Rayer and her husband at a high school dance, Rayer's mother, Jeanette Wyatt, joked, "We shouldn't have ever let them go on that first date."

Wyatt teared up as she looked through the pages with her daughter one day recently.

"She said she'd never heard of anyone putting so much effort into their death," Rayer said. "I just want to make sure that certain things are said and done."

Because faith plays such a role in her life and her family's, Rayer gave the girls their books during the Saturday night service at Westlink Christian Church.

The books are her special gift for this Mother's Day, but Rayer said they're an idea that could be copied by anyone, for graduation or any special occasion where love is part of the mix. Several of the women who helped Rayer are working on their own books.

"It took an illness for me to realize what is important, and I don't think people should wait," Rayer said.

She typed her part of the books with a pencil, because she can no longer straighten her fingers. She has lost 80 percent of the strength in her arms, and she uses a three-wheeled walker.

But Rayer remains optimistic. That's why there are blank pages at the back of her daughters' Mother's Day books. They're for the things she still looks forward to: "Weddings, you know, things like that. Important events."

More days filled with love.

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