This Family Will Change the Way You Think About Adversity – and Blessings
By Tom Konecny, MeetAmerica
Stop and think of the most comforting place in your life. It’s that place where you feel secure, at peace and relaxed. Chances are it’s your home.
Let’s narrow that down even more: within your home, what’s the safest and most soothing spot you can imagine? For most of us, that place is the bed – it’s comforting, it’s reassuring, it’s relaxing. It’s just safe and sound.
For Elysia Tirado and Jason Pasenow of suburban Cleveland, that’s the place where they would worry about their son the most.
“My life was consumed with, ‘Is he going to die today?’” Tirado said. “When I go to get him out of bed, will he be breathing?”
The new normal
Things weren’t always this way. When Landen, 9, was born, he was like any other child. Happy, healthy and incredibly cute. Their lives were normal, if not slightly chaotic while Jason worked full-time serving in the Navy. They’d also just moved from their home state (Ohio) to San Diego, where they had no friends or family.
Yet had Elysia not been laid off from a mortgage industry job, she wouldn’t have been able to spend as much time with daughter, Kailee, and Landen – then 9 months – when she started to notice things.
“(Landen would) always wake up with a swollen eye,” she said. An MRI would eventually find a mass laying over his eyeball like a blanket, and a biopsy would confirm it as leukemia.
“From there I sunk,” Tirado said. Family rallied and visited while Landen learned how to walk and speak his first words in a hospital. But during an Ohio visit at 22 months, Landen’s leukemia returned. After finding a tumor at the base of his spine, he received chemotherapy and full head and body radiation. A year after this scare, a bone marrow transplant through a woman in Germany saved Landen’s life.
But that’s when Landen developed even more problems: epilepsy, central nervous system diseases, sleep disorders, hydrocephalus, constipation from atrophy, and nerve damage from the waist down.
Never give up
“For a while he laid in bed like a noodle,” Tirado said. “I was determined to get him up and moving. I refused to let him lay in bed like vegetable. He had to relearn how to hold a spoon, fork and cup.”
Landen would ultimately lose his ability to talk, he physically can’t do much without help, and he receives feedings through a tube in his stomach which he’ll have for the rest of his life.
“Since then (age 2), it was a battle and struggle,” Tirado said. “Some of the medications have almost killed him, and we have had him in hospice care a couple of times. It was bad for a while, we really thought he was going to pass away.”
The cancer dealings were never easy while Pasenow juggled work that didn’t find him deployed, but did send him traveling occasionally from the family.
“It’s not good when you’re in another state, something’s going on with your family and you can’t be there for them,” Pasenow said. “It’s hard. It’s not good, as a dad, to be away from it.”
Not only that, but Jason isn’t technically her husband at the moment. Originally married in 2006, they divorced four years ago, only to become re-engaged with plans to be married again next year.
“Every time something bad happens,” Tirado said, “something good happens.”
Pasenow credits the military for playing a large part in keeping his family together and afloat. His superiors have always allowed him to be with his family whenever needed, and the government benefits have provided more assistance than he imagined. While his patriotic pride is naturally strong, he feels an even greater love for America than most, and sees his military service as a gift.
“I’ve been to a lot of different countries and seeing how things happen there,” Pasenow said. “The military is always going to be a family for me.”
Home sweet home
The family was ultimately able to return to its Ohio roots. Tirado soon discovered that working outside of the home was a necessary form of therapy.
“(Work) helped, because I literally felt like I was waiting and watching for him to die slowly,” she said. Today, Tirado uses her caregiver experience as her livelihood: she serves as a paraprofessional working with special needs and disabled children.
“I love it,” she said. “It’s nice to be around it, and I think I’m good at what I do because of (Landen).”
Landen will always be their little boy who, at least mentally, never really ages. His mindset is that of a 6-to-15 month old who can’t be potty-trained, so he remains in diapers. Though he’s a solid 60 pounds now, his parents must lift him constantly. A new van with wheelchair lift became an instant blessing, and they’re in the process of securing a new home with wider doors and hallways.
Landen’s bed seems a less daunting place now. He has a video monitor so Tirado and Pasenow can watch him every night. He continues to have seizures, so they must get up several times a night; falling and hitting his head remain constant concerns.
Kailee, 10, is a big sister in more ways than one. Not only is she a principal laughing partner, she regularly plays with him, reads to him and sings songs to him at bedtime, where he loves to cuddle.
Tirado also has in-laws and a sister-in-law who will show up to help at the drop of a hat, which gives them a brief respite.
“Our life’s been very difficult,” Tirado admitted. “Looking back, I don’t think there’s anything about it that I would or could change.”
Tirado maintains that Landen has taught her a lot about herself as a mother, because she didn’t have the best childhood growing up, nor the best role models.
A boy like any other
Friends often ask how Landen is doing, and despite all the hospital visits, mobility issues, regular medications, homecare nursing and general household noise, Tirado assures all of them that life is just fine.
“He’s doing good,” she said. “He’s alive, he’s breathing and he’s happy. No matter what he’s going through he always has a smile on his face and is always happy. He acts like nothing ever happened.”
As for the disabilities, Tirado accepts who Landen is – right here, right now – and how he’ll always have his special challenges.
“He’s a little boy just like any other little boy,” she said. “I definitely don’t see the disability at all. I see Landen.”