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By Jessi Emmert, Good News Magazine

Photo courtesy of Justin Trapp Studios via Tom Hauser.

Photo courtesy of Justin Trapp Studios via Tom Hauser.

Two haunting lines from Switchfoot’s 2011 title track “Vice Verses” have been replaying in my head. “Where is God in the earthquake? Where is God in the genocide?”

Where is God in times of tragedy? Where is God in the cancer? Amy and Tom Hauser have lived that last question.

The Lump. It was May 2010. Tom and Amy had been living with their two children in Houston for nine months after a move from Des Moines. Their marriage was bumpy, their future was uncertain, and the last thing they needed was a health crisis.

It started with a tragically common scenario: Amy found a lump the size of a walnut under her right arm. She had no family history of breast cancer. She wasn’t overweight. She was active and healthy. She had passed an annual wellness exam with flying colors two days before. Yet, there it was.

“Right away, the radiologist – what she was seeing was not good. We had to wait five days for the call, but I think I already knew,” Amy said. “I just have this memory of driving home on I-45 with tears streaming down my face thinking ‘I have cancer.’”

Amy was diagnosed with invasive ductal carcinoma breast cancer. Later, they found out it was in stage two – it had spread from the right breast to the lymph node systems. “Then came testing to figure out what kind, where it originated,” Amy said, “They said I was triple negative – which is not what you want, you want to be positive so they can give you targeted therapies.”

Photo courtesy of Justin Trapp Studios via Tom Hauser.

Photo courtesy of Justin Trapp Studios via Tom Hauser.

Amy explained that because they had just moved to Houston, they hadn’t made very many friends yet. They also didn’t have any family in the area. This contributed to the overwhelming sense of fear she experienced after the diagnosis. “After I got the call, I kind of plopped down on the couch, alone in my house. And yet, somehow, I felt my first sense of ‘this is going to be OK.’”

Amy said she felt a strong sense of God’s presence reassuring her that, no matter the outcome, He would be with her through the fight. Her journey with cancer had just begun, but Amy and Tom decided then and there to let God have control of the situation.

“It was interesting,” Tom said, “We had been struggling up to that point, but after her diagnosis, I think it was one of the strongest points in our walk with God. We just turned it over to God’s hands.”

The Journey. The treatment plan for Amy began with 18 weeks of chemotherapy. She would also eventually undergo a bilateral mastectomy and reconstruction. The treatment meant Amy needed plenty of time to rest, something Tom embraced wholeheartedly. “Tom is a doer,” Amy explained, “He was so good about taking care of the kids, taking care of me. There was just this sense of relief to know he was fighting for me.”

Tom said they also began to lean on support from members at their new church, The Loft at The Woodlands United Methodist Church. Amy had recently joined a women’s Bible study, which became a strong support system during the cancer journey.

Amy said one thing that benefitted their teenagers Ross and Sara was talking to a family friend who was a breast cancer survivor. “She took them on a trip to Florida with her family when I was going through treatment,” she said, “That was so good for the kids to see that cancer was something that someone they knew had beat.” Tom added, “One thing that helped so much was that they didn’t ask if they could take the kids to Florida. They just told us they were and insisted we let them help us.”

Amy said it was tempting as a mother to try to act like she felt great all the time, but she did her best to be honest with the children and with Tom. Other cancer survivors she spoke with encouraged her to not hide how she felt and to be honest when she needed help.

“Don’t rob the giver of the gift,” she said, “We all want to say we’ve got it and not burden people. But it’s not a burden, and when you don’t let them help you, you rob them. Tom had to say that to me.”

Going through the experience of cancer with Tom at her side made Amy rediscover attributes she loved about him. “I knew he was taking care of things, taking care of me,” she said, “That allowed me to really rest and know things were OK with everything else. He never made me feel like it was a burden, ever.”

Amy explained that in the months leading up to her diagnosis, they had seriously discussed separating, but for some reason she felt God encouraging her to wait a year. “As it ended up, one year later, almost to the day, was when I found out I was cancer-free,” she said.

Tom emphasized that what kept them strong from the beginning to end of their cancer journey was making God their foundation. “Everyone believes in something,” he said. “You have a rock, you have a foundation. Depending on what your foundation is, something like this can rock it. If your foundation is your job, cancer can wreck it. If your foundation is money, you can hire the best doctors in the world and it may not change the outcome. Fortunately, we made our foundation God and we found a way to deal with it through him.”

The Recovery. On the eve of Thanksgiving 2012, Amy had her final surgery. She was declared cancer-free, but the recovery process was a long one. Amy suffered severe back pain in the months after her surgeries. And through the joy of being cancer-free, the fear of it returning still lingered. “For so many, that fear is crippling,” Amy said. “It’s in your head. You just don’t want to relive it again.”

Amy is checked every six months for cancer. “A day or two before that, I do start thinking, you know, what if?” Amy admitted. She added that she has taken these fears to God and asked him to be Lord over them.

“When you face your own mortality, when you give up control to God, you realize that no matter how much you micromanage, to some degree it’s out of your hands,” she said, “So yes, I’m careful about my health, what we eat, managing stress — but I refuse to obsess to the point where it dominates my life.”

God taught Amy through the cancer experience to appreciate the blessings she has in life, including her marriage with Tom. Amy said that she has come to understand that things in life and marriage will never be perfect on this side of eternity, but that she has come to appreciate the beauty of a marriage truly centered on God.

The Beginning. In the months before her diagnosis, Amy had started working with foster children and foster parents by leading retreats and different programs. She coined the name “Made For More Ministries.”

“Then the diagnosis came and I was so frustrated,” Amy said. “It just seemed like I was doing all this work for God and the cancer threw all that off track. And yet, I felt reassured by God saying that he had a plan.”

Photo courtesy of Justin Trapp Studios via Tom Hauser.

Photo courtesy of Justin Trapp Studios via Tom Hauser.

At the time, the cancer diagnosis seemed like the premature end of Made For More. In reality, it was the beginning of something bigger than what Amy had ever imaged for the ministry. “When you face your own mortality, you start thinking about what you should with your life differently. You think ‘What do I love?’ versus ‘What does the world want me to do?’”

Amy said that her love has always been working around nature and helping others. “God just opened these doors for me to open up an equine-assisted therapy program for women dealing with cancer.” Through the help of a local ranch, Amy began connecting women with cancer with a way to be around horses and nature. “For me, just being in nature is so therapeutic and what I love,” she said.

Amy said her journey has allowed her to see that God will create beauty from heartbreak if we allow him to. “God never promises we won’t go through struggles. I would never wish cancer on anyone. But did beautiful things come from our story? Yes.”

The last question I asked Amy was the first one on my mind: where is God in the cancer?

Amy didn’t hesitate. “The middle,” she said. “He’s right in the middle.”

Jessi Emmert is the editorial assistant at Good News.

Amy and Tom Hauser run Made For More, a ministry devoted to encouraging couples to find their God-given more. Amy is the author of In His Grip: A Walk Through Breast Cancer. Find out more about their ministry at madeformoreministries.com.

By Jessi Emmert, Good News Magazine

AJ Michalka is best known for her role in the music duo “78Violet,” with her older sister Aly. The platinum-selling sisters have also starred on Disney, and AJ also starred in the films “The Lovely Bones,” “Secretariat,” and “Super 8.”

Now she’s starring in “Grace Unplugged,” a new Christian film about a teenager, Grace Trey, who runs away from home to chase her Hollywood dreams. Grace’s father, Johnny Trey, was a pop star before he became a Christian and walked away from mainstream music. When his old agent arrives to give him a second chance, he turns him down — but Grace secretly records a cover of her dad’s old hit and sneaks away to Hollywood with the agent. In California, she battles with whether she can give up all her convictions for the sake of success.

Photo courtesy of Lionsgate.

Photo courtesy of Lionsgate.

AJ spoke to Good News’ Jessi Emmert about the film, her faith, and surviving in Hollywood.

How did you learn about the film and what made you interested in being part of it?

Actually a good friend of mine came up to me at church, believe it or not, and said, “I’ve read this script, ‘Grace Unplugged,’ and I’d love for you to take a look at it and see it if it’s something you like and want to pursue.” I completely fell in love with it.

How do you relate to Grace, the main character?

It’s a really tough business. The thing that people tend to forget is that everything is tough in this world. We live in a sinful world that is full of surprises and things that we can’t necessarily control. You have to hold your ground, you have to stay in the word, you have to stay faithful. My character gets caught up in the idea of fame and stardom and her career taking off, instead of asking, “Why am I doing this? Am I doing this for God? Do I have the right intentions or do I just want to be a celebrity?” That’s her main struggle.

My favorite part in the film is when she comes home to the people she loves and cares about and is vulnerable and apologizes and she’s accepted back into the community. It’s not that they judged her, they just completely had to let her go. She ran away and becomes this self-centered being and is trying to prove she can make it, and she does. But then it’s the question of “Do you want to continue this life and not have family or would you rather close that experience and start a new chapter as who you are?”

What is it like to be a Christian in Hollywood?

It’s pretty amazing. I don’t know how you can do anything and not be a believer. It’s such a powerful relationship we have with Christ and is so awesome. It’s what keeps me going in anything I do. So not even being a part of the business, just in everyday life. It has helped me so much, it has really shaped the decisions that I made. It’s given me a wisdom and discernment about the choices I make. Being able to see the repercussions of a choice I could have made but didn’t, I think that’s important. I think life is about choices. In this industry you can make some really poor ones that can really affect you as a human and affect your happiness.

I feel really blessed by my relationship with Jesus that I can feel very centered in my work. I know I can be vocal about who he is and my relationship with him.

What would you say to a young Christian girl with dreams of “making it” in Hollywood?

I would say to never compromise. Don’t ever compromise who you are as a person or what you believe in, just for fame or for money or for power. It’s so fleeting. People can be very fickle. You have to make these decisions based on your gut and what you think Christ would want for you. That’s the most important thing. You can’t make selfish decisions, it’s not going to work in the end. It’s going to tear you down. I think it’s really about staying in the word and staying focused and putting God before your career, that’s really important.

A lot of people will instantly put someone in a box of being a “Christian singer” or a “secular singer.” You seem to avoid that. Can you discuss that?

I feel really blessed that I’ve been able to enter both worlds and do well and be accepted as an artist and have good feedback. My sister and I — because we come from a Christian background — I kind of feel like our music, even though it’s secular, we’re always writing from a Christian standpoint. What we believe in, our morals, and our decisions — those are always backing our music. When we were younger we had a song called ‘Never Far Behind’ that we released to Christian radio and when it did so well, it was so cool. It was awesome to be accepted in different genres. They really shouldn’t be separated. I mean music is music and it’s amazing and it should touch anyone of any race, any color, any religion. The fact that we’ve been able to enter both worlds is so exciting and I love it. My Christian fans can feel comfortable listening to my secular music and vice-versa.

What do you hope people take away from this film?

I hope people are moved. No matter what background they come from, whether they’re close to their family, whether they’re believers. I hope they feel something from the film, that they’re triggered from this overwhelming emotion that you can succeed and accomplish your dreams but there is something else you need to believe in, something else that needs to drive who you are as a person. It shouldn’t just be your career, it should be the Lord. I hope that it witnesses to people, I really do. I feel like it’s a really amazing film when it comes to relationships with parents. I hope that young women and young men are able to walk way and question their relationship with their mother or father and work on it. I hope it connects people and it strengthens bonds.

Jessi Emmert is the editorial assistant at Good News. 

 

By Jessi Emmert, Good News Magazine

Wood-Family-Special-Needs-01

The Wood Family. (Photo courtesy of the Wood family)

For five years, Kevin and Becky Seiler were unable to attend church together. They would go to their Catholic parish every week, but one of them would stay outside of the service with their son Max, who has autism, a condition characterized by difficulties with social interaction.

“Most couples you know, they can put their kids in Sunday school and go to worship,” Kevin explained,“For us, that wasn’t really an option.”

When Max was in kindergarten, a special needs teacher at his school suggested he play basketball on the special needs team at The Wood- lands United Methodist Church – a 10,000 member congregation north of Houston.“It was late in the season, but they accommodated him anyway and brought him in,” Kevin said.

Special-Needs-01

Photo courtesy of The Woodlands United Methodist Church.

Kevin said during this process they were invited to come on Sunday, where Max could be involved in a special needs Sunday school. At first they were hesitant: Kevin was raised Catholic, and when he and Becky married she also became Catholic.“At that time it was more significant for us to go to Mass, but we figured we could at least both attend something together and it would be better for Max.”

Kevin said it became evident that Max was benefitting hugely from the age-appropriate Bible lessons he was learning through the special needs Sunday school class. Before attending The Woodlands United Methodist Church, the family had never been part of a church with a special needs ministry.

Special-Needs-02

Photo courtesy of The Woodlands United Methodist Church.

“What we really wanted was something the whole family could do together,” Kevin said. “Rob Renfroe would carry on many of the Harvest services, that was really significant for us.” Renfroe’s explanation of the Profession of Faith was what made the connection for him.“At that point I understood that it was the same ministry and this was the place that ministry was being delivered to us and for us,” he said. “After that we felt ready to become members.” [Renfroe is the pastor of adult discipleship at The Woodlands United Methodist Church, as well as president and publisher of Good News.]

Becky emphasized the sense of belonging she feels at the church.“It’s different here,” she said,“It’s such an eye opener to feel like we belong here and there really is something for every part of our family.”

This sense of belonging was evident in Max’s face.“Today was my first Sunday being a fourth grader in the Sunday school class at church,” he grinned, “I get to do a little of everything now.”

Building the ministry

Special-Needs-03

Photo courtesy of The Woodlands United Methodist Church.

In 2004, six families approached the leadership at The Woodlands church about starting a program for children with special needs.“They kind of circled together and said ‘We need this so we can attend worship together,’” Chris Robbins, the director of the special needs ministry, said.

The program began with preschool through sixth grade on Sunday mornings and there were only those six participants. Today, more than 200 families like the Seilers are involved in the program.

Amy Wood and her husband, Jim, are long-time members of the congregation and saw the program begin around the same time their now 10-year-old son James was diagnosed with autism.“There was a mother who had twin girls with autism, she was part of one of the first families to go to the leadership at the church and ask for programming,” Wood said,“And they were very receptive.Then it became a collaboration of realizing that this could be something a lot larger.”

Robbins was working as a special education teacher when the program began. She participated in the program as a volunteer until Debbie Glass, the first director of the program, asked Robbins if she would take the position when she moved away three years ago.

In addition to Robbins, the program has two coordinators, 20 interns and countless volunteers. A special needs prom hosted by the ministry earlier this year was run by more than 150 staff members and volunteers.

The program provides trained volunteers to shadow children with special needs during weekend services. Most of the children are able to participate in their age-appropriate Sunday school class with their shadow, Robbins explained. There is also a room where the children can go with their shadows if they need some quiet time.“The majority of the kids now can handle being in a mainstream Sunday school class with their shadow,” Robbins said,“And they do participate. It’s wonderful.”

There is also programming for older students and adults with special needs. The high school program is called “Remix” and the adult program is called “Revive.” Remix students participate in worship with the rest of the youth group, and then have their own classroom and meet together as a group.

Brown-Family-Special-Needs

The Brown Family. (Photo courtesy of the Brown Family)

Bill and Sheri Brown’s adult daughter Stacy is involved with the Revive program. Stacy was born with a genetic condition that her parents initially believe was Williams syndrome. They eventually found out she actually had Coffin-Lowry syndrome, a very rare condition. Those who have Coffin-Lowry have intellectual disabilities and have delayed development.

“She has been able to be an aid with some of the younger Sunday school classes too,” Sheri said.“She has been able to go to the prom with the ministry.”

Bill said Stacy has built wonderful relationships with people involved in the special needs program, who often will take her to movies and other outings. He said she loves going to parties with her other friends in the ministry.“We’re really pleased with all the opportunities she has had because of the ministry,” he said.

Special-Needs-04

Photo courtesy of The Woodlands United Methodist Church.

Robbins said it has been awesome to see the teenagers and adults with special needs find a bond in each other. “They really feel they belong with each other and there is a sense of community.”

A home for the whole family

Wood explained how the special needs ministry has made a huge difference in her family’s life since James’ diagnoses. “My husband and I have a strong medical background,” she said, “So we suspected early on that something was off. We could see that he didn’t have a lot of joint attention skills.”

Wood said that since James was diagnosed early, they were able to begin therapy with him at a young age. In addition to understanding James physical needs, she had to deal with her own grief. “On the inside, it was just learning to pick up the pieces of your heart,” she said.“Some of the people at the church who had special needs kids told me, ‘Don’t let yourself drown in your grief and disappointment.’”

Wood-Family-Special-Needs-02

Photo courtesy of the Wood Family.

Wood said at that point she decided to reach out to God and developed a strong spiritual relationship with him, as well as other members of the church family. “I decided to follow people who had allowed themselves to let go of their dreams for their child and not drown in the sea of what would have been,” she said, “Being in this environment allowed me to accept his disability and embrace what God had in store for us through him.”

Robbins discussed the challenges parents of children with special needs may face, including finding funds for therapy and learning the best resources for their child.“It’s a rather difficult journey,” Robbins said, “Especially the moment when they find out. That can be devastating.”

Wood has a doctorate in pharmacy and her background was in drug research specializing in cancer care. After James was diagnosed, she never returned to that career, but has used her medical background toward helping other parents of children with autism. She volunteers as the president of Families of Effective Autism Treatment in Houston and lectures at universities about autism treatment.

Wood explained that James has fairly severe autism and cannot speak at all, but he can read and write. He also communicates using an app on an iTouch that allows him to respond to questions. “If we go to a restaurant, we can ask James what he wants to eat and he can use iTouch to tell us,” she said, “Technology developed in the last five years has been a huge advance for people with disabilities.”

Wood said James loves participating in the special needs ministry.“It’s been cool for him to go swimming with other kids with special needs and to go ice skating,” she said,“He loves it.”

Wood emphasized that the special needs ministry has been beneficial for their entire family, especially for James’ sister Caroline. “The siblings of those with special needs, they’re really kind of the unsung heroes in all of this,” she said, “It’s hard to be a sibling of a special needs kid. Their parents spend a huge amount of time with the special needs child.The ministry provides a chance for the siblings to get together and talk about it so they don’t feel isolated.”

Wood said she has been part of a Bible study with other special needs mothers. She said it has been key for her to have those companions in Christ and to be able to discuss the challenges.The family also is able to participate in special worship services once a quarter that are held just for families with special needs kids.

“Our kids so many times don’t fit in a worship service,” she said.“This one is for us. It fits.”

The Seilers agreed that their whole family has found a home at the church.“It always seems like when Max comes here, it’s just for him, that it’s individual,” Becky said.

Kevin added that their 5-year-old daughter Lily also loves going to church.“Our kids want to come to church on Sunday,” he said,“They’re always excited, and that’s been really great.”

A network of support

Seiler-Family-Special-Needs

The Seiler Family. (Photo courtesy of the Seiler family)

The first Saturday of every month, Easter Seals Houston comes to the church campus and provides respite for families so that parents can have several hours of private time.

Kevin said the Family Day Out has been a huge blessing for them because the special needs staff is always willing to accommodate each child’s individual needs. “For us, you know, you can’t just hire a baby sitter,” he said, “It doesn’t work like that. We don’t have family around here. So for us, that’s one of the only times we have a chance to go out.”

There is also a program by a group called Autumn’s Dawn directed at high school graduates with autism. It teaches them social skills so they are more equipped to get a job.

Robbins said that for those with autism, the social skill classes can be a major resource. “You can have a man with autism who is just brilliant, who can divide and multiply and quote Scripture, but then if he screams and runs out the door, his participation in society is hindered” she said. “These classes are about helping them fit into society.”

The Woodlands United Methodist Church ministry also encourages other churches to build special needs programs. “The first thing you need to do is pray,” Robbins said, “and then maybe find out what it’s like to have a ministry like this with an existing one. Pastoral support is necessary for it to work. That’s key.”

Special-Needs-05

Photo courtesy of The Woodlands United Methodist Church.

The church families with special needs children appreciate the blessing of the ministry, and agreed that it’s something all churches should strive for, regardless of how big the church is. “If a church doesn’t have a special needs program, they just really aren’t ministering to those members who have children with special needs,” Kevin said, “There are so many kids who have so much spiritual potential.”

Sheri Brown added that after attending churches with no special needs program, The Woodlands United Methodist Church has been a huge blessing. “I can’t imagine another church now,” she said.“What would it make it difficult would be finding ways for us to get involved if there wasn’t something for Stacy to do. All our energy would end up going to finding a way to include her and then we wouldn’t be able to participate in other activities.”

Kevin spoke about how Jesus often made a point and effort to reach out to those who were crippled and disabled. “That was obviously a key part of Jesus’ ministry, but yet there are so many churches who skip over it,” he said, “It’s just ironic.”

Robbins said it’s important to understand that there may be church members uncomfortable with a special needs ministry, but that God will make provisions for his will. “We don’t want our families to feel like they can’t bring their child to church.They need to know that we’re going to embrace them whether their child has Down’s syndrome or autism, no matter what.”

She encouraged church members to pray about what special needs ministry should look like at their church, and to always seek God’s direction in taking the steps to form or enhance a special needs program.

“Everyone has some kind of disability in some sense or another. We’re human; we need to reach out to everyone.”

Jessi Emmert is the editorial assistant at Good News. 

By Jessi Emmert, The Huntingtonian

Leah Smith with her parents, Joan and Creager Smith. (Photo by Jessi Emmert)

Every morning for 10 years, Joan Smith paused outside her daughter Leah’s door before going inside to wake her.

At the threshold, her fingers on the doorknob, she would listen. If she heard rustling blankets or Leah murmuring, she would relax and walk in.

But if there was silence, she would close her eyes, take a deep breath and prepare to find her daughter dead in her sleep.

Leah was born with hypoplastic left heart syndrome, which means the left side of the heart is underdeveloped. She received a heart transplant at 11 days old. Doctors told her parents Leah may live up to 10 years with the new heart.

“When she had her 10th birthday, it was like all of that was lifted,” Joan said. “It was like ‘she’s beat the odds!’ and the burden was lifted. I didn’t sleep those first 10 years, but then I could sleep.”

It’s been almost 12 years since Leah passed her heart’s 10-year expiration date. In three weeks, Leah will be 22.

This birthday, however, will be different. It will be a celebration of life and, yes, of beating the odds. But this birthday, there’s only one thing on Leah’s wish list.

She needs a new heart.

Again.

The impossible chest pains
On March 6, Leah moved slowly but surely through the sterile white hallway at Methodist Hospital in Indianapolis. She had obviously made herself at home on the seventh floor – the organ transplant floor.

“We can sit in here,” she said, opening the door to a sunroom full of chairs. “I like coming in here. It’s nice to get away from the room.”

She plopped down on a sofa, adjusted the big metal beeper attached to her hip and pulled off her yellow facemask.

Then she leaned back and began her story.

“I got to do a lot of cool things because of my transplant,” she said. “Until now, it had never been a bad thing.”

That all changed at the end of the spring 2012 semester, she said. Leah, who is a senior broadcasting major, began experiencing chest pains, and by July, the pain was constant and severe.

Leah saw her family doctor, who told her it was impossible that the pain was related to her heart since they cut the neural connections to her heart during her first transplant.

“They kept saying ‘It’s not pain in your heart, you can’t feel pain in your heart,’” Leah said.

According to the Stanford Heart Transplant website, this is called denervation. “The incisions in heart [transplants] … sever the sympathetic and parasympathetic nerves … another effect of denervation is that you may not perceive chest pain.”

Leah Smith in her room at Methodist Hospital in Indianapolis. (Photo by Jessi Emmert)

Joan said that the doctors suggested a number of diagnoses unrelated to the heart, but no treatment fixed Leah’s chest pain. She began to lack energy and said she slept “all the time” and struggled to exercise.

Leah chose to commute instead of live on campus for the fall 2012 semester because of her chest pain and lack of energy.

“When I started commuting in the fall, I couldn’t even make it to class and back home without immediately needing to go to bed,” she said.

During the last week of classes in December 2012, Leah suffered a heart attack.

“It was a different kind of pain than the regular chest pains,” she said, “kind of a higher-up sort of pain.”

Leah went to the emergency room at Lutheran Hospital in Fort Wayne and was then rushed to Riley Hospital for Children in Indianapolis. There, the doctors performed an echocardiogram and a catheterization, Creager Smith, Leah’s father, said.

“The catheterization found that her small blood vessels of her heart were becoming blocked,” he said.

The doctors said that Leah’s heart was in diastolic heart failure, which means it was not contracting to propel blood out to the body, Creager said.

“At the point it pumped just fine, it just couldn’t relax,” Leah said.

Doctors told Leah she was going to need another heart transplant.

“The more devastating news to me at that point was that I would have to leave Riley and come here to Methodist Hospital for care,” Leah said, “For me, I was like ‘I can do another transplant’ but they made me leave Riley!”

Leah said she was very emotionally attached to Riley because she had her first heart transplant there and has had many of the same doctors her entire life. Riley can only take calls for hearts for patients under 18, however, so Leah had to switch hospitals.

She visited Methodist Hospital about every other week during January and February as she waited for the transplant. Doctors also told Leah that to be eligible for the heart transplant list, her Body Mass Index (BMI) needed to decrease. She began dieting to try to lose weight for the transplant.

Leah continued to try to live life normally, despite the fact that she was still lacking energy. She enrolled in classes this semester, hoping to still graduate this May.

Things took a turn for the worse on Feb. 26. Leah suffered a second and more pronounced heart attack, Creager said.

“I woke up in the middle of the night in just horrible pain,” she said, “Back pain, neck pain, cold sweats. I googled symptoms of ‘woman heart attack’ and they were all listed. I knew I was having another heart attack.”

Leah tried to self-medicate with nitroglycerin tablets, which are used to treat chest pain, but around 5 a.m., Feb. 27, she knew she had to go to the emergency room.

At the Lutheran Hospital emergency room, doctors tested Leah’s blood for troponin, a blood protein indicator that reveals the heart’s level of distress. A normal troponin level, according to the American Heart Association (AHA), is between 0 and 0.5. Leah’s troponin level after her first heart attack had been 7.5. After her second heart attack, it was 13.

Leah was transported by ambulance to Methodist Hospital and admitted into an intensive care room. Doctors performed another catheterization and found that in the two months since her last heart attack, her heart had deteriorated much faster than anticipated, Creager said.

“The diagnosis now is just heart failure, both diastolic and systolic,” he said. “It’s having trouble pumping. It’s having trouble relaxing because of the progression of the deterioration of the vessels.”

One of the most difficult things for the cardiologists to grasp is that Leah actually experienced chest pain related to her heart because the denervation should have made it impossible, Creager said.

Joan said the chest pain was a blessing because it gave them a warning that Leah’s heart was failing.

“Other transplant patients are just going along and pass away, because there’s no pain that warns them something’s happening,” she said, “That’s what we expected. God decided that he was going to give her a wakeup call.”

Evaluating options
On March 4, several doctors, including the doctor who performed Leah’s original heart transplant – Dr. John Brown of Riley Hospital for Children – met to discuss Leah’s options.

One option was taking out Leah’s heart and using an artificial heart, but Leah’s bone structure was determined to be too small for it.

They also considered using a left ventricular assist device (LVAD) or left and right ventricular assist device (Bi-VAD).

According to the National Heart, Lung and Blood Institute’s website, a VAD is “a mechanical pump that’s used to support heart function and blood flow in people who have weakened hearts … the device takes blood from a lower chamber of the heart and helps it pump it to the body.”

However, doctors determined that Leah would only be able to live for six months at most on a VAD.

Leah is still ineligible to be listed for a heart transplant because of her weight. Joan said she needs to lose about 20 pounds to lower her BMI enough to be on the list.

If she were listed, there would still be challenges to find a heart match because Leah has a high number of antigens. Antigens are substances that provoke antibodies. This is a problem, Leah said, because if she received a heart that had fewer antigens than her body, her immune system would attack the new heart.

Another option is a process that would remove the excess antigens from her blood, making more hearts a match for her.

“There’s a treatment, it’s called desensitization,” Leah said. “It would basically clean my blood and put the red blood cells back in without the antibodies.”

Leah cannot start desensitization until she loses the weight, however.

The biggest problem, Joan explained, is time. There is no way to gauge how long her heart – or “Jimmy’s heart” as Leah calls it, named after her first donor – will last. Based on how rapidly her heart deteriorated from the first heart attack to second heart attack, it may not last long.

After discussing the options, doctors gave Leah the option to go home or remain in the hospital.

“They basically said, ‘You can die here or you can die there,’” Joan said, “No matter how many times they tell us there’s nothing they can do, we’re convinced that they’re wrong because God has worked miracles with her her whole life – he put her nerves back together.”

Leah explained that she wanted to stay in the hospital because she is still hopeful her heart will last long enough for her to lose enough weight to be eligible for the transplant list and either go through desensitization or be matched with a heart that has her antigens.

“I’ve decided I believe God will carry Jimmy’s heart as long as I need it to get a transplant,” Leah said, “I like to believe he will take care of the antigen thing too. There is a chance there could be a match out there that would match all my antibodies.”

Leah said she is confident that no matter the outcome, God has a plan.

“Whether it is through my life or through my death, I just want all of this to glorify God,” she said.

Friends when it counts
Leah’s best friend, Whitney Abbott, a 2009 HU alumna, was curled up next to Leah the entire interview. A few times, she interrupted to correct a point or remind Leah of a part of her story.

“Whitney is my flash drive,” Leah said with a laugh, comparing her own brain to a computer.

Whitney and Leah met around seven years ago through a ballroom dance class. Leah said she has always loved to dance and ice skate.

The two were planning on going on a cruise before Leah’s first heart attack.

Leah Smith with best friend Whitney Abbott. (Photo by Jessi Emmert)

Leah said that if she gets her heart transplant, she plans to go clothes shopping and then go on that cruise because “by then, I will be so skinny!”

Whitney bemoaned the strict diet Leah is on to lose weight for the transplant.

“She’s only eating 900 calories a day,” she said, “Do you realize how little 900 calories a day is? A day!”

Leah does have one food exception planned: birthday cake.

Both young women have been busy planning Leah’s 22nd birthday, which she will celebrate at the hospital.

“I want to have it in here,” Leah said as she looked around the big, glass room. “There’s another transplant family, and one of them is a caterer. She has offered to cater my birthday party.”

Leah said that she hopes to walk at graduation in May. She will still be a few credits short of her broadcasting degree, but she is close enough to the requirements to walk.

“It would be really nice to graduate with my class,” she said.

Leah emphasized that if she could communicate one message to HU students, it would be to never take their health for granted and to value it.

“You never know what could happen,” she said, “I just want to encourage healthy eating and exercise, because you never know when you’re going to need an emergency surgery, and you may not make it because you’re overweight.”

Whitney chimed in, “And also to be an organ donor!”

Leah laughed, “Yes!”

Whitney said Leah’s first heart attack terrified her, because it was the first time the reality of her condition hit her.

“I haven’t know her since I was little baby, so it hasn’t been engrained in me she could be gone at any time,” she said.

However, Whitney said they have both found a sense of peace about Leah’s situation.

“If God chooses to keep her with us, that’s what I want,” Whitney said. “But if he chooses to take her home, I’m going to trust him that it’s for the best.”

Whitney explained that she had seen Leah’s faith grow tremendously during the last summer and fall. She believes this was God preparing her for what was about to happen.

“There’s this house church that started in downtown Fort Wayne,” Whitney said. “Leah has come, and I feel like since then her faith has grown a lot stronger.”

Leah said that her confirmation verse has been a stronghold in her life. It is Psalm 28:7, “The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.”

She explained that she has suffered with depression in the past, stemming partially from seeing other transplant patients she grew up with die.

“My fear was this happening to me,” she said, “But since we started the house church, I’ve just become so strong in my relationship with God and am at peace. Whether I live or die, I’ll be happy. If I die, I’ll be in heaven. If I live, I’ll be with Whitney on a cruise.”

Faith breeds hope

Signs on Leah Smith's hospital room door. (Photo by Jessi Emmert)

Leah was worn out from the interview and retreated back to her room with Whitney. Joan stood up and moved to sit next to Creager on the couch.

They explained that Leah’s older sister Kathleen is taking care of things in Fort Wayne while they stay at the hospital. No matter what, Joan said, they always do things as a team in their family.

“It’s the four of us or bust,” she said. “That’s how it’s always been. Whatever we do, we do together.”

Joan and Creager agreed that God is what has gotten their family through the long journey and advised parents to encourage their children in their faith above all else.

“The foundation of loving God,” she said, “that little mustard seed is going to be there when your child needs it. That’s what we’ve learned in all of this. Our only role as parents is to create that foundation of faith.”

Joan looked sideways at Creager and asked if he had anything to add. He smiled.

“I think that’s pretty good.”

They walked back to Leah’s room, which was recognizable from a mile away because of the bright-colored signs plastered all over it, proclaiming “Leah Evangeline Smith,”
“Team Leah” and “The Party Starts Here.”

Inside, Joan went through her bags from Wal-Mart to show Leah what she bought that day. She held up a bright purple T-shirt with butterflies and several bottles of nail polish. Leah clapped and laughed.

Joan Smith shows her daughter what she bought her. (Photo by Jessi Emmert)

The atmosphere was light, loving and content.

The girl who sat in the bed in the middle of the room is not a dying girl.

She is a laughing, ice-skating, smiling, shining, dancing, fighting, wonder girl.

You can follow Leah’s updates through her Facebook page, Team Leah. For more information on Leah’s first heart transplant and childhood, check out this Huntingtonian story from 2010.

By Jessi Emmert, The Huntingtonian

(Photo provided)

The Forester baseball team will begin their season tomorrow against Saint Catherine University (Ky.) at a three-day tournament in Kentucky. Their focus has been on preparation in anticipation of the season.

The Foresters (26-26, 20-15 in conference play last season) will be forced to face the beginning stretch of their season without Jamon Hammel, their senior starting shortstop. Hammel suffered a torn left labrum during winter training and will be out for the opening stretch of games, Frame said.

“We have moved a couple of infielders around to accommodate for his (Hammel’s) absence until he is healthy,” Mike Frame, head coach, said.

Sophomore Blake Hohlbein said that the team is battling through injuries but is looking forward to a strong season.

“We’ve had a couple guys banged up, but I think we’ll be just fine,” Hohlbein said. “We have a strong returning defense that should help put us over the top.”

Frame said the Foresters have improved during winter training and he is confident about their chances this season.

“This team for the most part has a great work ethic,” he said. “Our leadership has been solid over the winter months.”

The team’s schedule will be challenging, Frame said, but is set up in a way that allows the team to develop. The Foresters have early season matchups against Indiana University Southeast and Martin Methodist College (Ken.), both of which received votes in the preseason NAIA DII Coaches’ Poll.

“Our priority ever year is to win the conference,” he said. “If we cannot win the regular season conference championship, we want to play well enough to get into the conference tournament and win that.”

The conference champion and conference tournament champion get automatic bids to the national championship. The preseason conference poll pegged the Foresters at No. 5. Taylor University, last year’s conference champion, was the only Crossroads League team to receive votes in the NAIA DII poll.

The team will graduate eight seniors at the end of the season, four position players (Hammel, Josh Lanphier, Adam Christner and Jordan Klobfenstein) and four pitchers (Brian Kirschbaum, Xyan Adkisson, Cody Walters and Tyler Palmer).

Frame said he feels confident the team is recruiting well.

“We feel very good about our recruiting for next fall and feel like we have addressed our needs in light of our seniors who are graduating,” he said.

The Foresters’ first home game will be March 13 at 2 p.m. against Aquinas College (Mich.).

By Jessi Emmert, The Huntingtonian

In the past nine months, I think I’ve read at least 50 articles about how millennials — those born between 1983 and 1995 — are doomed.

First of all, we have way too much debt. National student tuition debt is around $1 trillion, and the average college graduate has $27,000 in student loans.

Second of all, we are trying to find jobs in a terrible job market. The Great Recession caused highly qualified people to take lower-caliber jobs, and the result is that 43 percent of college graduates are now working at jobs that don’t require a degree.

Third of all, apparently we’re lazy (according to Fortune), heretics (according to The Pew Forum) and moochers (according to The Washington Post).

It’s not exactly encouraging knowing that the generations above us have slapped the indebted, unemployed, lazy, heretical, mooch, uninspired, co-dependent, whiny, exhausted label on us.

Somehow I’m just not convinced that the acidic, doomsday language flowing from so many lethal tongues is helping anything.

I can’t even keep track of the number of times an older person has told me how hard it will be for me to find a job (especially since I want to be a journalist, which is apparently the new code word for “homeless woman”).

We KNOW we’re graduating into a terrible job market. We’re the ones who are staying up until 4 a.m. applying for dozens of jobs, trying to ignore the voices telling us how lazy we are.

We’re not doing everything wrong. According to Gallup, in 1979, 24 percent of young people said they smoked cigarettes. Today only 12 percent say they do. Likewise, the percentage of young people who have tried marijuana has dropped from 41 percent to 20 percent.

According to the Millennial Impact Report, 63 percent of Millennials volunteered for a nonprofit in 2011, and 75 percent said they made a financial donation to one.

We aren’t the perfect generation. But neither was our parents’ and neither was our grandparents’. And like it or not, we’re the future.

Jessi Emmert is a senior journalism and history major. She also works at Our Sunday Visitor publishing company. She can be reached at emmertj@huntington.edu. This column reflects the views of the writer only.