The DesMoines Register Article

Stacie Rhea plans before long to buy her kids presents for each of their birthdays until they're 18 and keep the gifts in a trunk.

She knows she won't be around to watch them open all of the gifts.

The presents are just one of her ideas for keeping "mommy" alive long after she's gone.

She's also writing down thoughts about her kids - Kyler, 12, Casey, 5, and Ellie, 3 - and plans to make video diaries where she tells the kids about how she felt when she was pregnant with them or about how she met their dad.

If she's lucky, she'll get at least a few more years to watch her kids grow up.

Rhea, 38, of Urbandale has amyotrophic lateral sclerosis, a degenerative and fatal neurological disease also known as Lou Gehrig's disease. According to the ALS Association, the life expectancy of an ALS patient is three to five years.

Although Rhea was just diagnosed in May, she suspects she's had ALS for about two years. Yet she's encouraged that her ALS doesn't seem to be progressing too rapidly.

Her kids are too little to be left without a mother just yet.

"That's what brings me to tears every time, is my kids," she said.

The disease is something Rhea knows too much about. She watched her mother die from ALS four years ago, and her grandmother and likely her great-grandmother died from ALS, too. According to the ALS Association, just 5 percent to 10 percent of all ALS cases are genetic.

Rhea knew she had a 50 percent chance of getting the disease, which causes progressive muscle weakness and ultimately paralysis, but that didn't keep her from hoping. Now she hopes for her kids, who carry the same risk.

Rhea's symptoms began overnight in March 2006. She woke up and her legs were twitching. The cramps followed, but she came up with excuses for why it wasn't ALS.

Later, she started doing a class at the gym and found she could increase the weight she was lifting, which contradicts ALS because the disease doesn't allow you to build strength.

It wasn't until January 2007 that she found she couldn't maintain the weight she had been doing. At first, she ignored it.

Then March brought the clincher - a tired feeling in her shins and calves.

She was diagnosed in May.

The disease hasn't progressed rapidly, although tests before Christmas showed she has lost about half her strength in her feet.

"Walking is becoming ..." Rhea began. Her dad, Steve Daugherty of Adel, finished: "a lot harder than it used to be."

Her difficulty with walking is nothing compared to the impossibility of maintaining a household. Son Kyler, born a quadriplegic, lives at ChildServe, but the Rhea home still contains Stacie, husband Michael, Casey, Ellie and Stacie's niece, Sara, 16, and nephew, Jessy, 12.

"By 2 o'clock, I'm ready for a nap," Rhea said.

She can still do the laundry but can't get it up the stairs. She likes to have someone with her when she goes to the grocery store. She has to remind her kids not to pull on her, so they don't knock her over. She's still learning not to feel silly when she asks for help.

While Rhea is dealing with ALS as best as she can - and she has to admit the antidepressants help - her husband and her dad are struggling to get over the mind-set that this isn't a problem they can fix.

"I guess I just have to admit I was in denial," Steve Daugherty said of his initial reaction to his daughter's diagnosis. "It just couldn't be happening. If it was happening, it could be fixed."

His daughter knew better. The Rheas are taking steps to ready their home for the progression of Stacie's disease.

As the weakening and paralysis spread to the muscles of the trunk of the body, ALS affects speech, swallowing, chewing and breathing, ultimately resulting in the person needing permanent ventilatory support to survive, according to the ALS Association.

An addition under construction on the back of the Rheas' home will add a master bedroom with a bathroom and walk-in closet, and a playroom for the kids. The bedroom will have French doors so that Rhea can see her kids when she's bedridden. The Rheas plan to put desks and toys in the playroom, and Rhea said they're even contemplating bunk beds.

She doesn't want to miss out on tucking her kids in.

"It's a room to keep us all closer," she said.

Rhea said her attitude about her kids is much different than before she was diagnosed. Then, she and her husband had wanted to have another baby and she'd hoped her kids would never grow up.

Now, she's like "please hurry."

"I don't want to rush them growing up, but ...," Rhea said, leaving her thought unfinished.

She confesses she's become more lenient in her parenting because she doesn't want her kids to remember her as a yeller.

She tells Casey every night that she loves him and that he's special. She can't say no when Ellie gets out of bed 20 times to come into her parents' room for one more kiss.

Her kids do this without knowing yet what Rhea knows too well.

She said, "These are the last good years of our life together."