How one woman empowered herself and her family with strength, courage, and faith
Alaina Uribe Weaver claims she’s not a writer, and maybe she’s not, but she certainly has a story to tell. Alaina writes a blog and maintains the website www.OurStrengthProject.com, where she describes her family’s struggles and joys with daughter Makayla Uribe’s diagnoses with not one but two rare neurological diseases, Chiari malformation and pseudotumor cerebri.
Alaina defines their story as one of courage and faith. “It’s the story of courage when you feel like you don’t have any,” she says, “and then finding that you do.” As for faith, Alaina says they had always believed in God, “but I don’t think we really understood what that meant until this happened.”
At the age of nine, Makayla developed a splitting headache that never went away. Ultimately, an MRI, performed at Alaina’s insistence, showed that Makayla’s cerebellum had grown deformed and herniated into her spinal column. “You have a hole” in the base of your skull, Alaina explains, “and your spinal cord comes up through the hole and connects to the brain.” Makayla’s brain is sinking into that hole, and the doctors cannot stop it. This is known as Chiari malformation.
Six months after the Chiari malformation diagnosis and Makayla’s first surgery, doctors discovered the pseudotumor cerebri. “The part of the brain that produces and reabsorbs spinal fluid quit working. The symptoms are similar to those of a brain tumor,” Alaina says. The diseases are completely separate. People can have one disease without the other, but what makes Makayla’s case so atypical is that she has both. To complicate the situation further, the two conditions work against each other.
To date, Makayla has had 28 brain surgeries. “As a mother, your instinct is to fix your children,” Alaina says, “but when you know there is no fix . . .” Her voice dwindles, but then she starts again, stronger. “All you can do is pray for them and love them through it. And you have to be the brave one even when you’re so scared.”
During Makayla’s hospital stays, Alaina doesn’t sleep. She has to be reminded to eat. When Makayla returns to her room after surgery, Alaina’s worry doesn’t end. She still sits up all night with one eye on her daughter and another on the monitors, which Alaina has learned to read, analyze, and program. Alaina also never steps foot outside of the hospital once Makayla is admitted. “It’s weird,” she says. “You look out the window, and you see this whole world happening. Everybody’s going to work and doing their thing, and yet your whole life is in that room. It’s hard.”
It’s even harder because Makayla is not Alaina’s sole responsibility. Her husband and an older daughter, Alyssa, need her. Alaina’s husband, Dallas, proposed to her six months before Makalya was diagnosed, but the wedding was put on hold for a few years. Still nearly newlyweds, Alaina admits that the relationship takes a lot of work on both their parts. “It’s very easy for me to keep the focus on Makayla and forget about Alyssa and Dallas,” she says.
Daily, Alaina struggles with the guilt that she’s not the mother Alyssa needs or the wife Dallas should have. “I think that’s kind of where God comes in because I think he has helped all of us learn to find compassion with each other. Because it’s not fair. Alyssa always takes a backseat and so does Dallas.” But the guilt, like a pendulum, swings the other way, too. When Alaina makes the conscious effort to go shopping with Alyssa or to watch her cheer at a football game, or when she and Dallas get away for a much-needed date, the guilt for leaving Makayla eats at her. “I worry. What if something happens to her while I’m gone? The what-ifs are overwhelming.”
Last year, however, events ratcheted Alaina’s guilt and stress levels even higher. Dallas broke his back in a horrific car accident. He also had to have surgery removing 12 inches of his intestines. After months in the hospital and rehabilitation, Dallas has returned to work, but during those months, Alaina had a second patient. “Probably for the first time since Makayla got sick, I really thought I was going to have a nervous breakdown. I really, honest to God, didn’t think I could do this [anymore].”
The blog helped. Alaina started writing as a distraction after Makayla was diagnosed. At first, the blog was just for her and, even now, she writes many entries that the public never sees; but after many requests for updates about Makayla’s health and requests for Alaina to speak to groups or individuals about their experience, Alaina made the blog public. “It just caught on. Before I knew it, all these people were sending me messages if I hadn’t posted at least once a month. Strangers were asking me if everything was okay, if I needed anything,” Alaina says in awe. “It built and built until I realized it was my own sanity I needed to save.”
Alaina already knows something about saving herself. She is a domestic abuse survivor. Her first husband, a soldier and the father of her daughters, was physically abusive. “I spent 10 years hiding what happened from the outside world behind closed doors because I didn’t want the military to know, I didn’t want my family to know.” Eventually, the abuse was discovered, and he was convicted. “The story I shared helped change some of the military’s laws [regarding domestic abuse]. That was the first time in my entire life that I realized that what I had to say mattered,” Alaina recalls. “And it can change people’s lives.”
Alaina believes this is why their family has chosen from the very beginning of Makayla’s illnesses to be so open. Alaina didn’t want to slip back into the cycle of secrecy and living a double life. “And I thought that if I had any purpose in life, maybe it was to share the good, bad, and ugly of my journey.”
She wonders if possibly Makayla had been sick from birth, but God knew she wasn’t ready to handle Makayla’s illnesses. “I had to find my voice, I had to find my strength, I had to figure out how to navigate life first.” Alaina acknowledges that she’s still learning every day, but she believes she’s finally found all those things. Yet every day she still has to make a choice: “I’ve chosen to be strong. I’ve chosen to have faith. And I’ve chosen to have courage. Even when those decisions were the hardest things I’d ever done.”
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