Ailing mom makes moments count

Ashley Romer, diagnosed with two unusual and debilitating diseases, helps her twins ring in a birthday at the hospital.

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Ashley Romer, 26, of La Grande, holds her twins, Gage and Gabriel, during the boy's second birthday party Saturday at Providence St. Mary Medical Center. Romer, who suffers fro Guillian-Barré syndrome, was refusing the critical treatment she needed to walk again because she didn't want to miss her boys' birthday. To help her keep the date and the treatment, hospital staff agreed to throw the boys a party.

WALLA WALLA -- Ashley Romer admits she was stubborn. She wasn't going to miss her twins' second birthday, even if it meant giving up the rehabilitation treatment she desperately needed to walk again.

"I had already spent seven days away from my little ones, and I wanted to be home for their birthday," Romer said, as she was surround by almost a dozen little ones, including her twins and several adults who celebrated Gage and Gabriel's second birthday Saturday.

The reason Romer refused to miss this birthday, even if it meant not walking, is because she doesn't know if she will see the twins' next birthday or any others to follow.

"There is always a chance of having a heart attack if I have too much activity or too much stress. So I guess I have to learn I have to take one day at a time and be thankful for the time I do have with them," Romer said.

Peripartum cardiomyopathy is why Romer could suffer a heart attack, even though she is only 26. It is a rare form of heart disease that can develop shortly before or after giving birth. In her case it was after the twins were born.

"It is really hard because they grow up so fast, and birthdays are such a milestone and you want them to remember you being there," Romer said.

But it wasn't Romer's heart condition that threatened to keep her from her twins' second birthday, but another rare disease that hit her for the first time late last month.

On March 26, almost two years after being diagnosed with peripartum cardiomyopathy, she developed Guillain-Barr?© syndrome, a disease in which the body's immune system attacks the peripheral nervous system, including in the legs, which left Romer mostly paralyzed from the legs down. And left untreated, it could have killed her.

So what followed was a week in ICU at Grand Ronde Hospital in La Grande, and then another week of rehabilitation therapy at Providence St. Mary Regional Medical Center, where she is now.

"They definitely miss their mom. She is an amazing mother. She has had a lot of challenges since the twins were born," Romer's mother, Kristy Moore said, taking a break from chasing the twins, as well as their older sister, Avila, 3.

Since Romer was transferred to Providence last week, Moore has made the two-hour trip every day so all three of her daughter's children could have lunch with mom.

"Her children are her life. Who knows if there is going to be another birthday. Ever since the cardiomyopathy, we celebrate every time we have an opportunity. I think as a family we learn to appreciate every day," Moore said.

And that is why Romer originally refused the critical therapy that would help her to walk again; she was not going to miss her twins' birthday. So because of her "stubbornness," staff at Providence knew what they had to do.

On Saturday afternoon, the twins, Avila and several of their little friends with parents in tow from La Grande, bounced, rolled, swung and frolicked on the various kinds of colorful therapy equipment in the pediatric rehabilitation room.

The smiles on their faces showed pediatric rehab equipment is even more fun than a bouncy castle. It helped, too, that a Thomas the Tank Engine cake and decorations had been brought in for the twins' birthday celebration.

And as Romer sat in her wheelchair, watching her kids play, and occasionally asking them to come to her for a hug or to sit on her lap, the young woman didn't look very debilitated. But that wasn't the case a short while later, when she firmly asked to get out of the wheelchair and into a normal piece of furniture.

So in front of Romer's family, high school girlfriends and other guests, Moore helped her daughter to stand and then carefully sit in a chair that had been set beside her. As the young woman ambled from chair to chair, moving more like a elderly invalid, an awkward silence quickly filled the room as the adults stopped talking and even the children hushed.

But that stubborn young woman wouldn't have it. Romer quickly started joking and chatting with her sister and girlfriends. Soon, the entire room was laughing again.

"Words can't describe it," Romer said, thinking of her children. "They are your whole life. I mean that is what I live for right now. They keep me going every day.

"I plan to be there for everything. That is a lot of the reason that I am so stubborn. I think I can do a lot more than I can. I really push myself. But to be 26 and to have two rare diseases and be a single mom, that is a little scary."

Alfred Diaz can be reached at alfreddiaz@wwub.com or 526-8325.

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