The Short of It
Due to a rare disease, 15-month-old Alexus Wiese may not see her second birthday, but her parents are determined to live each day to the fullest, inspiring moms like me in the process.
"We don't know how long she has, but if it's only a month, at least we know we tried to do as many things as we could with her," Alexus's mom Paige said.
Her daughter suffers from cystic encephalomalacia, which is caused by pockets of fluid and cysts that grow in the brain. Heartbreakingly, kids die from the disease when their brains stop growing and fill with fluid.
Alexus, who has the brain activity of a 4-month-old, requires a tracheostomy and feeding tube, and her body is limp, making normal life challenging to say the least. But Paige, her husband Shawn, and their son Weston want to enjoy as much family time as possible, while Alexus is with them.
"She deserves the world, and we're going to make it happen. I want to accomplish as many things as we can together before it's too late," Paige explains about the Nebraska family's recent trip to Adventureland in Iowa, meeting Gov. Pete Ricketts and future plans to visit Disneyland.
But Alexus's parents admit it's tough to plan things when they don't know how long their daughter will live.
"Every day I find myself thinking, 'OK, we made it to 15 months, but will we make it to 16 months?' I want to plan for Christmas and shop for her, but I can't do that. I have to live day-by-day," Paige says.
It's impossible to imagine going through what these parents are experiencing, but it's even more unfathomable since they also lost another daughter, Joselyn, to cystic encephalomalacia in 2011 when she was only 14 months old. Oddly, doctors say the condition is not genetic.
However, the Wiese's outlook is truly inspiring. Paige says she chooses to stay positive and refuses to have a pity party for herself. It's hard to focus on the smaller challenges I face as a parent when I know someone like this mom is out there, meeting such insurmountable struggles with as much of a smile and determination as she can muster.
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