Customers who walked into Nate Wade Subaru on Jan. 23 may have felt like they were attending a Hawaiian luau — and they were. The local car dealership recently teamed up with the Make-A-Wish Foundation to surprise Leah Spencer, a 12-year-old from Orem, with the news that she and her family would be going to Hawaii. The Salt Lake City car dealership made the announcement by hosting a Hawaiian party, complete with Polynesian dancers and shaved ice.
The day was all about Leah, who was diagnosed with cystic fibrosis a few months before she turned 4. Leah is one of four girls born to Chris and Kirstin Spencer. Three of the Spencers' daughters have physical disabilities. However, noticeably absent in conversations with Kirstin Spencer are mentions of the challenges the family faces every day. Rather than focusing on the conditions her daughters have, she focuses on who her daughters are.
Spencer describes Leah as kind and nurturing, with a maternal instinct. Her mom also says Leah cannot be described without some mention of her love for horses.
Then there is Allison, the 10-year-old daughter Spencer refers to as “my crazy child.” She’s fearless. She is also the only daughter who does not have health difficulties.
“She is so compassionate,” Spencer said. “She loves everybody. It doesn’t matter who they are. She loves them all.”
Spencer says her third daughter, Samantha, age 8, “has the greatest laugh in the history of laughs.”
Samantha has microcephaly, a condition that has appeared in the news lately because it is linked to the Zika virus. She also has leukodystrophy, cerebral palsy, cortical visual impairment and epilepsy. Samantha is completely dependent on the care of others. Still, Kirstin Spencer wouldn’t use any of these conditions to define her daughter.
“I think ‘perfect’ is the perfect word for her,” Spencer said. “She just resonates this beautiful light. She really can’t communicate, but I know what she’s saying. She brings this sense of peace to everybody, and she’s beautiful. And I think she handles her medical problems with such grace. She’s just the light of everybody’s life in our family.”
Spencer describes her youngest daughter, Victoria, as a typical toddler and the piece of their family they didn’t know they were missing.
“She just brought our family to this completely new dimension that we didn’t even know existed,” Spencer said. “We weren’t really in a dark place, but she just brought our family out of a darkness that we didn’t even know we were in. She just filled our family with more love.”
After Victoria was born three years ago, Spencer had just returned from the hospital and was sitting on the couch holding her new baby when the phone rang. When she saw that it was a call from Primary Children’s Hospital, she assumed it was a reminder for Leah’s next appointment and didn’t plan to answer, but something prompted her to pick up the phone.
Victoria was barely 40 hours old when she was diagnosed with cystic fibrosis.
“I’ll admit there were more tears. There was more questioning, a little anger, just those normal emotions that are expected,” Spencer said. "I questioned Heavenly Father for the longest time. 'Why did he do this to me? I’m not this great person. I don’t know if I’m this strong. I don’t know if I can do this.' So for the longest time I was in a dark place spiritually because I questioned everything.”
When Spencer describes a typical day, it is clear she has little time for herself. Leah and Victoria require 45-minute breathing treatments three to four times each day, and she cares for Samantha much of the time in between. Still, she says, “I know it doesn’t sound like much.”
Spencer downplays her ability to handle the constant care she provides but also recognizes the blessings she has received from it.
“Now I can see the benefits,” Spencer said. “And I don’t think I’m a special person. They’re just my kids. They’re the ones the Lord sent to me. That’s what I believe. I truly believe I was entrusted with these kids because apparently I can handle it.”
In retrospect, she can recognize experiences that prepared her.
For example, Spencer’s mother worked with children with special needs her whole life.
“She had a true love for them, and it kind of exposed me and my sisters to this lifestyle,” Spencer said. “I grew to love kids with disabilities and special needs.”
Although Spencer's mother died 10 years ago from breast cancer, she believes her mom is still helping her.
“I’m the type that also believes that she is that guardian angel on the other side, walking the path with me because I couldn’t do it if I didn’t have that sort of influence and that sort of presence guiding me where to go," Spencer said.
It was also her mother who taught Spencer the value of sacrifice. When Spencer was 3, she had a tracheotomy and needed a tracheostomy tube for seven years. Her parents fought to keep her alive and happy. She can now appreciate her parents' efforts.
Spencer says she could not handle the daily demands of her life without her neighbors.
“We live in the greatest neighborhood in the history of neighborhoods,” she said. “People can say whatever they want, but it’s not true. It’s only true of our neighborhood. It’s not just my family that they are serving. They go out and serve anyone and everyone at a moment’s notice, so I think God has a hand in that too because they are my neighbors. They are the people I go to church with. They are the people I associate with the closest.”
Although Chris and Kirstin Spencer were both raised as members of The Church of Jesus Christ of Latter-day Saints, they rarely attended Sunday meetings until the last few years. Kirstin had been attending church for a year and a half by herself when Samantha was hospitalized and placed on end-of-life treatment. Doctors gave Samantha four to six weeks to live.
“I didn’t know what was going to happen, and I knew I had to be sealed to my family,” Spencer said. “I was being a little selfish. I wanted Samantha physically there when we got sealed, and I don’t know if I would’ve been able to live with myself if she hadn’t been.”
While Samantha was in the hospital, Spencer's husband also felt it was time for him to return to church.
“I truly believe Samantha is the key as to why he got back to where he is,” Kirstin Spencer said.
The family was sealed on Oct. 11, 2014, in the Mount Timpanogos Temple.
“I’ll be eternally grateful for my daughter because I know she was that instrument, that tool, to get us to where we are,” Spencer said. “The fact that we were able to be sealed as a family and now that whole weight has been lifted because now whatever happens in the future, we know that those covenants have been made, and there’s nothing that can shake us now.”
While the family face challenges, Spencer's hopes for her children are the same as any parent's hopes.
“I am a realist, and I realize that Samantha will be gone from this life sooner rather than later, and I’ve accepted it,” Spencer said. “I’m not saying it’s not going to be hard, but we’re trying to give her the best life that we can right now, and if she just passes knowing that she was 100 percent loved and adored, I’m OK with that.
“The crazy thing is, it’s the same with my other kids. As long as they know that their parents love them and their family loves them, whatever happens in life, that’s all it really comes down to.”
Email: mjones@deseretdigital.com