PLEASANT GROVE, Utah (ABC 4 News) - We're only days away from the holiday dedicated to reflection, to family, and to showing thanks. One Pleasant Grove family has an intimate story of gratitude.
"The question always comes up and it's a very normal thing for a child, the question was, 'Am I going to die?' and as a mother, and my husband David as well, it was very important for us to be honest, so I said, 'Yes, you are going to die, but we all die and we go when we're supposed to go."
These are the words of mother Sharilyn Evans, but her 8-year-old Stephanie somehow already knew this, having what her parents call a 'deeper sense of her mortality' than even they could grasp. David Evans says, "Even as parents, we try to teach them and try to instill in them faith, and they seem to come with that already. It's kind of hard to explain."
Stephanie was born with a terminal disease, Spinal Muscular Atrophy or SMA; her muscles only strong enough to hold a flower. Their second child, Steven, faced a 25 percent chance of being born with the disease. He also had SMA, but at a more advanced stage.
Children with SMA don't sleep and in the middle of the night, Stephanie and Steven would pretend they were characters from their favorite story "The Secret Garden." Wish granters from the Make-A-Wish Foundation of Utah, along with some one thousand volunteers came together to compose the garden exactly as Stephanie wished, complete with a gazebo, a waterfall…even a secret place where Stephanie and Steven could meet in their wheel chairs.
David said, "I think always in the back of her mind, there may have been this little bit of hope that the garden would bring some of that magic into her life, possibly...in regard to her physical disability."
Stephanie died just before Thanksgiving eight years ago when she was 10, Steven died when he was 7.
Stephanie made a will for her family to read after she died.
Her will reads:
"My will: my rings go to Mom and Dad, my bed goes to Natalie, my gel pens go to Steven...I will always come to the garden if you need me, even if you can't see me, I'll be with you and with Steven. I love you all and will be with you till the end, Stephanie."
This year is the garden's 10th birthday. The trees stand tall, the roses multiply, the garden now as Stephanie imagined.
David said, "You almost feel like, in a funny way, that you have a little piece of heaven in your home. When they pass away, there's quite a noticeable difference that special feeling that was in your home while they were here is gone."
David and Sharilyn have had four children since. Their 5-year-old, Madeline, also born with SMA. Just like Stephanie trusted in her will, today, when the Evans visit their garden, "The Secret Garden," they find Stephanie and Steven immortalized.
"Like life, it cycles: Spring is beautiful and everything is blooming in the garden...it's very representative of our life cycle, and we are firm believers in resurrection, and then when Spring comes again, it all comes back," says Sharilyn.
The Make-A-Wish Foundation says to this day, Stephanie is the only one of their kids nationwide whose wish included a will.
