Life with Luke
“we’ve seen a lot of miracles…”
The medical team talked in hushed voices in the hospital hallway.
“What do I say to them?” the nervous resident asked the lead doctor, looking for guidance.
“You’re just going to have to tell them.” the doctor said plainly.
“So, I just say it?”
“Yes.”
On the other side of the wall, in a small, sterile exam room, Andrew and Kristi Lundgren could make out every word. They’d just celebrated a monumental first birthday with their twin boys, Luke and Caleb. After life-threatening complications at birth, and months spent in the neonatal intensive care unit, the boys were doing well, and the Lundgrens had reason to believe the hardest days were behind them. Now, they steeled themselves and waited, as the anxious doctor-in-training entered the room for her inaugural attempt at delivering bad news.
Brain scans on Luke revealed he was suffering from a catastrophic form of epilepsy, and was experiencing up to 120 silent seizures a day.
“It is wreaking havoc on his brain,” the resident explained, glancing quickly at the doctor for reassurance before continuing. “His prognosis is very, very, very, poor if we can’t control them. And they are very hard to control.”
“The worst day of our lives,” Andrew says, choking back tears. A decade later, he still gets emotional re-living it.
Baby Luke started to regress quickly after that day, the impact of the seizures overwhelming his brain. “He used to be able to sit up, smile and laugh,” Andrew says. “Then it got to the point where he couldn’t even lift his head up.”
‘We’ve tried so many things’
It’s a warm Friday morning, and the Lundgrens are sitting side-by-side in the living room of their Evanston home, just blocks from Northwestern University where they serve in full-time campus ministry. The sweet smell of coffee cake fills the room. Worship music plays on low volume through the television. The twins are playing a video game upstairs while five-year-old Hannah sits quietly watching Mom and Dad.
Andrew is mid-sentence, when a piercing scream interrupts the conversation. Luke appears, dressed in red cotton shorts and a red and blue tank top, his long legs moving methodically down the stairs.
Another scream follows. Unfazed, Kristi pulls Luke close and pats his stomach to soothe him. “Say hi to Ally,” she says. “She’s here to visit with us.”
“Hi Ally. Hi Becky. Do you need to go to toilet?” Luke’s speech is breathless and frantic. His arms and legs flap quickly, his eyes shift without landing anywhere in particular.
“Oh Luke, you’re a funny guy. Do you want to see Dad?” Kristi asks calmly. Andrew scoops Luke into his lap and strokes his back. Legs curled, head resting on Dad’s shoulder, he smiles.
11-year old Luke is legally blind, severely autistic, and non-verbal. He repeats phrases and makes loud vocalizations, but is unable to communicate. He has put holes in the drywall of the Lundgren home from banging his head repetitively, and struggles with aggressive outbursts that sometimes require him to be fully restrained. HIs medical needs are complex and mysterious, and Andrew and Kristi are constantly in research mode, working with doctors and therapists to figure out the best ways to support their son.
“We’ve tried so many things,” Andrew says. “We’re open to anything. We’re moving doctors, seeking the best medical help in the city.”
“There’s definitely times where it’s just ‘I can’t do this another day, Lord. I’m totally maxed out here,’” Kristi admits. “Especially if he’s in a pattern of moment-by-moment aggression and you’re just cycling in and out of a meltdown.”
But even in the throes of meltdowns and setbacks, Andrew and Kristi are remarkably hopeful, and quick to point out the miracles. They’ve seen more of them in Luke’s eleven years than most will in a lifetime. That’s why they live with radical faith in the God who has carried them through some dark days.
‘There’s something wrong’
Before there were five, it was just Andrew and Kristi, newlyweds living in small-town Missouri. Kristi worked as a teacher, while Andrew was in the admissions department at a local university. They’d first met in a prayer service, and the plan was to spend a few years paying off student loans while preparing for life as overseas missionaries.
Kristi spent most of her childhood as a missionary kid in Rome, Italy, where her parents planted an international church. Andrew grew up in Montana, but always had a heart for world missions, especially after taking a short-term missions trip to Costa Rica at 15.
“I was really attracted to places that were hard. I admired people like the Hudson Taylors who just went and gave their life and died there,” Andrew explains, referencing the famed 19th century missionary to China. “There are people all over the world that don’t know Jesus.”
Andrew and Kristi were surprised to become pregnant quickly, and even more shocked when the ultrasound tech told them she saw two sacs. It was a normal pregnancy until 28 weeks when, during a routine appointment, the tech noticed Baby B wasn’t doing well. After a day of monitoring in the labor and delivery ward, and steroid injections to help speed lung development, doctors decided there was no more time to wait. Both babies would need to be delivered right away.
“Caleb came out crying. He was super tiny, but he was crying,” Kristi remembers. Luke was born shortly after, but a team of doctors whisked him away before Mom and Dad could even lay eyes on him. He wasn’t crying and, as his parents would later find out, he wasn’t even breathing.
“It was such a weird time,” says Andrew. “Everyone’s like ‘congratulations, you had your babies.’ We were like ‘yeah, but there’s something wrong. We haven’t seen them yet. This isn’t normal.’”
The lack of oxygen at birth had caused a severe brain bleed. Doctors also discovered Luke’s umbilical cord hadn’t been attached to the placenta, a rare and life threatening abnormality. “There’s no way Luke should have even survived,” the Lundgrens remember one of the medical staff telling them.
Both boys would require extra care, which meant Kristi and Andrew spent babies’ first Thanksgiving, Christmas, and New Year’s in the NICU, praying and waiting. Caleb’s growth was strong and steady, while Luke was plagued with setbacks.
“Any day could bring awesome news or ‘he just took a turn,’” Kristi says. Four long months, jolted between the heart-wrenching and the miraculous, depending on the day.
There was the open heart surgery that Luke was scheduled to have at one week old, to repair a duct in his tiny heart that doctors said wouldn’t close on it’s own. Until it did, without surgery or explanation.
Then there was the emergency surgery needed to remove part of Luke’s intestine. After surgery, Kristi was given the rare opportunity to hold her baby boy.
“I was so happy,” Kristi remembers. “With NICU babies, it’s a privilege to be able to even touch them.”
They relished the moments, until a nurse told them the reason - doctors weren’t expecting Luke to make it through the night and wanted Mom and Dad to have some final moments with their baby. They were prepared to “love him and send him to Heaven,” but Luke survived again.
By four months old, Luke had made enough gains to be cleared to go home and join twin brother Caleb, who’d been released from the NICU weeks earlier.
“We don’t know what life will look like for [Luke],” the doctors explained to Andrew and Kristi. He’s had massive brain damage. There’s so much we don’t know. His brain could do a lot of re-wiring and repairing and he could be typical. But also, you could have things that pop up his whole life.”
‘The Lord intervened’
Life settled into a new normal for the Lundgrens, or as much as is possible with infant twins. Luke’s development was always slower than Caleb’s, but he was stable and making great strides, learning to smile and sit up on his own. Andrew and Kristi were hopeful.
“We really started to open our hearts again to maybe we could still go overseas.”
Until one day Kristi noticed something odd about then one-year-old Luke. He seemed to startle easily and make unusual body movements. It was subtle at first, and doctors initially dismissed it as normal. But Kristi kept pushing, until she was able to see a top pediatric neurologist.
It was the day they’d accidentally overhear a muffled hallway conversation between medical experts in a hospital.
“As far as epilepsy goes, you couldn’t have a worse diagnosis,” Kristi explains. Even the best medicines available to treat it were less than 50 percent effective and in some cases, were actually making Luke worse. Desperate for options, Kristi joined a Facebook group with other parents battling the same illness. She pored over every shred of information she could find online about Luke’s condition. That’s where she discovered a specialized diet that showed promise.
“I’m just praying and praying. The Holy Spirit is telling me, ‘you need to do the diet. You need to start him on the diet.’”
Luke’s doctors agreed to the alternative treatment plan. To track progress, Kristi put up a wall calendar, with a red X for each day with no seizures. The X’s started to add up quickly. A few days here, a week there. At the longest stretch, Luke went two and a half weeks without a single seizure. Then one cold day in February, Luke’s seizures returned in force.. and his mother reached a pivotal breaking point.
“Andrew was at work, I remember I was at the kitchen sink and I just…” Kristi’s voice trails off as she searches for the words to describe the moments that followed. “It just felt like that cry from your gut. I was like ‘God, just heal him.’ I’m just sobbing, broken, desperation. In my heart, I knew He would do it.. that these [seizures] are going to be gone.”
“He’s promised us that there’s still healing for Luke. There’s still freedom from that box that he’s in; that place of not being able to communicate. ”
When Andrew and Kristi brought Luke back for a check up, he hadn’t had a seizure in weeks. Doctors hooked him up at the hospital for a scan on his brain, to make sure they weren’t missing something.
“It’s not only improved,” the medical team explained, “his brain looks totally normal. No seizure activity. It’s totally resolved.”
“Total celebration,” Kristi says. “The Lord intervened. I know the Lord worked to cause his body to respond (to the treatment) but I think that day in the kitchen it was just.. I knew in my heart that God did it. That he heard my cry and he healed him.”
“We’ve seen a lot of miracles. You’re full of them!” Kristi says with a laugh to Luke, who’s moved to the dining room for a snack. He paces quickly in a circle, hitting himself in the head, a behavior common in autistic patients to help deal with sensory overload. “Any kind of communication is an absolute miracle for him. We have videos of him reading, right Luke? You can read books. Him learning to eat was a huge miracle.”
When he was three years old and still not walking, the Lundgrens responded to a prayer time at church to pray specifically for him to master the skill. That afternoon, God answered their prayer.
“Years of ‘Come on, Luke. You can do it!’ And then he just stood up and walked.”
Kristi stands at the table as she talks, using her hands to mix together oats, honey and chocolate chips in a large silver bowl. She forms them into “energy balls” and places them one by one on the table for Luke’s snack.
‘Wow, God. You’ve got us’
Their focus on Luke’s health, Andrew and Kristi put off applying for appointment as overseas missionaries. It turned out to be a divine delay that allowed the Lord to redirect their focus. They’d always known they had a heart for the nations, but over time they began to see the nations right in front of them - the more than one million international students who come to the U.S. for university. The Lundgrens joined Chi Alpha, a network of Christian ministries across the country that aims to teach and equip students in their relationship with Jesus. There are currently chapters on 284 campuses nationwide.
“We’re praying, we’re looking all over. From Ohio State, to Oregon, just to see where the Lord is leading,” Andrew says. He spent weeks doing research, creating spreadsheets, and coming up empty. Once again, he turned to prayer: “‘I don’t know what I’m doing, God. You can just tell me.’ And I heard Northwestern, just like that.”
They moved to Evanston’s Northwestern University to work with international students when their twins were four years old. The move would take them away from their families, their support system, and everything familiar. Kristi had her reservations, but the step of faith proved more than fruitful, particularly when they started looking at schools for Caleb and Luke. They discovered a unique option they hadn’t seen before - a school for students with highly specialized needs, within the Evanston Public School system.
“Literally a dream for a family like us. You pay nothing. It’s just like he’s going to your neighborhood school. It was just like ‘wow, God! You’ve got us.”
It was a perfect fit, with a team of highly trained teachers working collaboratively to develop care plans and teaching methods to help Luke thrive.
“When you have a kid like Luke, there are so many people that have to be involved.” Kristi says, jokingly pointing out teacher appreciation week, when she buys one gift for Caleb to take to school and 22 for Luke’s team. “It’s an expensive teacher appreciation,” she adds with a laugh. “But they’re all so crucial.”
‘I thought he had died’
Shortly after moving to Evanston, Kristi became pregnant again, this time with a baby girl. Hannah was born in 2013. Around the same time, came a major setback for Luke. After four years seizure-free, Kristi noticed him seizing in the middle of the night while she was awake caring for a newborn Hannah. A second seizure followed weeks later.
“I thought he had died,” Andrew says. “He was blue. I didn’t know how long he’d been there. I checked his pulse and that’s when I felt his pulse racing and I knew he was still alive.”
“That was devastating because the Lord healed him,” Kristi begins. “He doesn’t do halfway miracles. He was healed of seizures so why is he having these seizures again? That was a frustrating thing but we had people at the church praying. The church really rallied around us at that point.”
Andrew and Kristi were shaken, but dug even deeper into their faith in Jesus.
“When you enter the world of special needs parenting, you just have... seasons where you can hardly get out of bed without dropping to your knees like ‘[Jesus] I need you today to get through this and you’re the only one.’ I don’t think that’s a bad place to be. I want to always be that way, even if I don’t have extreme challenges.”
Luke’s seizures are now well-controlled with medicine and happen infrequently. But his health challenges require constant vigilance and adaptations.
“Just the typical things a family would do - going to a restaurant or any kind of establishment, you have to always think ‘Is Luke going to be able to handle this? And if he can’t, where is the exit? Can we get him out of here quick?’ It’s a rare occasion when all five of us can be doing something together. Usually one parent has to be on call to be with Luke and be his person wherever we’re at.”
Even on Sundays, the Lundgrens alternate who goes to church week to week. One parent takes Caleb and Hannah, while the other stays back with Luke, who can’t handle the music, games, and noisiness of a children’s service. His visual impairment also makes it difficult for him to adjust to new spaces. Caleb and Hannah have learned to adapt to Luke’s constant needs.
“Our kids are beyond their years in compassion. Then there’s times when they are typical kids and they’re over it, like ‘he’s driving me nuts.’
A momentarily quiet Luke picks up on Mom’s last three words.
“Driving me nuts!” he says, prompting a laugh from Kristi.
“There are no secrets! Luke will repeat everything and anything that we say!”
“He’s promised us that there’s still healing for Luke. There’s still freedom from that box that he’s in, that place of not being able to communicate.”
“I know deep, deep, deep in my heart that the Lord has things for Luke that he’s been promised,” Kristi says. “He’s promised us that there’s still healing for Luke. There’s still freedom from that box that he’s in, that place of not being able to communicate. When I’m with the Lord I just get that reassurance from Him that it is coming.”
Until then, the Lundgrens stay faithful, caring for their family and busy in ministry; mentoring, praying for, and walking with the international students they happily welcome into their lives and home. Their mission field looks different than either one of them envisioned. It’s the ‘hard place’ within their community, and their own four walls. They know people may be skeptical of their faith and optimism, but they’ve seen too many miracles to not believe.
“I just feel like the Lord’s growing the audience. That when Luke is healed and that work takes place, there’s all these people now that will witness. That’s what drives me. ‘Lord, this is all for your glory. I know this is going to bring such glory to your name. [Your] name will be magnified and honored through it.’”
As if on cue, Luke echoes his mom’s declaration.
“You’re honored through it!” he bellows.
An everyday promise and sustaining mission, for life with Luke.
For a behind the scenes look at my interview with the Lundgrens, click here.