Joy Sophia Stiles

3/7/17 – 3/30/24

Daughter of Jason and Casey Stiles

Sister of Joseph (12) and Jane (9)

When Casey was 15 weeks pregnant, it was discovered that the baby had fluid on her brain due to a blockage. The doctor said that she would likely need a shunt put in when she was born in order to release the fluid, which was currently preventing brain development. There was no way of knowing the extent of disability and challenges she would face. We would simply have to wait and see.

In response to this news, Casey and I were often asked, “How do you feel about this situation?” Our answer was always clear and simple, “We feel joy.” In order to communicate this to everyone, we named her “Joy”. Regardless of her abilities or the difficulties we would face as a family, we wanted everyone to know that we wouldn’t change a thing about her.

Joy was born at 32 weeks (8 weeks premature) in Wilmington, NC on 3/7/2017. The seriousness of her condition required her to be flown by helicopter hours after being born to UNC Chapel Hill. She would end up spending 2 months there. During that time, Casey and I stayed at the Ronald McDonald House in Chapel Hill with our 2 older children (Joseph and Jane) who were 5 and 2 years old. On a normal day, we would drop the children off at a Montessori school for the morning, drive to the hospital for rounds (when the doctors would discuss the plan for the day), and stay at her Joy’s bedside until lunchtime. I would leave to pick up the older 2, and we would spend the afternoon playing at the RMH or exploring Chapel Hill. Casey would come back to the RMH for dinner, and I would leave shortly after in order to sit with Joy late into the night. I would catch the last possible shuttle back to the RMH, and we’d do it all again the next day. The only interruption to this schedule was Saturday evenings when we would drive 2.5 hours back to Wilmington so that we could be in church Sunday morning at Cornerstone Baptist.

Every week, there would be an envelope with our names on it full of cash or gift cards that one of the pastors would hand us saying, “Someone slid it under my door. I don’t know who.” What a blessing it is to be part of the body of Christ! We would drive back to Chapel Hill Sunday night to do it all again Monday morning. This way, we could be in our church on Sunday, but Joy would never be without us for very long.

During these 2 months, she had a shunt put into her brain to release the fluid, a trach provided a more stable airway as she required a ventilator to help with her breathing, and a G-tube allowed her to be fed since she couldn’t swallow. After 2 months, she was stable enough to be transported to the PICU in Wilmington. The last 4 weeks would see us wean her off of some medicines and confirm she was stable enough to come home.

She came home on 6/19/2017! Our whole world had already been turned upside down, but her medical needs required constant supervision and care. So, we brought in a nursing company to provide nurses in our home on average 16 hours per day. If we didn’t have a nurse for the overnight shift, we would stay awake with her ourselves.

Over the years, we made frequent trips to and from Chapel Hill (sometimes once or twice a month), hospitalizations, major surgeries, and countless appointments. This created a new rhythm to our lives, but I haven’t told you about the good part yet.

Joy was the happiest little girl we could’ve ever asked for. She loved to smile, give hugs & kisses (in her own way), and to watch her siblings. She had a particular set of shows that she preferred, and when she was tired of one, she’d let you know. She flipped pages in board books, and she chewed on everything she could get her hands on.

We were blessed on many occasions by gifts, prayers, texts, and visits, whether at home or in the hospital. She even had a trip to Give Kids the World in Florida through the Make a Wish foundation in 2023. Her favorite part by far was coloring pages with Mickey Mouse at the Give Kids the World Village, though playing with her $15 Mickey Mouse balloon on the car ride home was a close second.

We always knew that Joy’s life would be short due to her special needs, but we never imagined it would end the way it did. On Monday (3/25/24), she was taken to UNC via helicopter. We fully expected to have her home by Wednesday. However, after a week of uncertainty, she passed away at 2:00 am on Saturday (3/30).

Through it all, we learned to count trials as joys because “the testing of your faith produces steadfastness”. (James 1:3-4) Over 7 years, we have learned to see that the trials grew our faith individually and drew us closer together as a family.

We also learned the true meaning of “Joy”. John Piper defines it as “a glad feeling in the soul, produced by the Spirit, as you see and savor Jesus in the Word and in the world”. His definition is excellent. Joy taught us how to see Jesus more clearly in His Word as we were able to understand passages about suffering and the sufficiency of God’s grace more deeply than ever before. She also taught us to look for Jesus in the world through small and simple blessings.

God created Joy in order to put His glory on display. His perfect, good, kind, and sovereign glory, and he gave her to us a gift. We are grateful for every moment, and although we would take her back without hesitation if we had the option, we trust the plan of our good and faithful God who always does what’s right.

After all, it’s this God who took on flesh in order to live a life we could never live so He could pay a debt we never could. It’s this God who died in place of His enemies so that anyone who repents and believes can have eternal life. Through His death, we can have life.

#CountingJoys

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