Forney, TX (October 28, 2024) – Grief is a deeply personal experience that all of us share, perhaps at different times in our lives. Possibly with different outcomes too.
Heather and her husband, Shay, know that feeling of grief well. Too well.
It was 1994, and the high school sweethearts were a young married couple expecting their first child, a beautiful daughter they named Shealyn. Heather, at 19, was so excited – being a mom was her dream, and their lives together were just beginning.
Shealyn was just 3 days old when Heather went to do that simple task, changing a diaper. As she unwrapped the diaper, she saw a terrifying blister covering her precious baby’s bottom. Knowing this was not any normal rash, she urgently began to place phone calls to find a doctor.
Fortunately, a cancellation had been made and she found help in a knowledgeable physician who knew exactly what they were facing – Epidermolysis Bullosa (EB). Standing in the pediatric exam room, he directed her to an emergency room giving her a slip of paper with his diagnosis and instructions for the medical staff.
What began joyfully turned into tragedy.
The ER staff was not as knowledgeable with the extremely rare disease. However, tests returned from a national registry in North Carolina revealed the sad truth.
Over the months that followed, Heather and Shay loved on tiny Shealyn through too many days in the hospital, absorbing all the information and knowledge they could. They learned there are four types of EB but unfortunately their baby had a recessive trait with the terminal type. With supportive care yet no cure, they were planning a funeral.
Shealyn died on Thanksgiving at just 5 months.
There is a peace that comes from knowing a disease is so rare – and the unlikely chance of having another baby with the same devastating diagnosis. Pregnancy with Haley, their now second daughter, was filled with that peace. There was rejoicing that she was born healthy – though anything other had not been expected.
Heather was so excited to learn her third pregnancy would be a boy. With the name Shelby chosen they began to plan for their new addition. Maybe it was just nerves at having a boy, but Heather did not feel that previous sense of peace.
Shay was traveling and had not made it back in town when the nurses gently handed Shelby to Heather in the delivery room. Almost immediately Heather noticed “a little blister on his finger” and her heart sank. She knew, once again, they were planning another funeral.
Shelby was diagnosed with the same disease his oldest sister had passed away from. Shelby died on Halloween of that year at just 6 months.
Suffering the loss of one and now two babies is unimaginable grief. Yet, Heather and Shay remained determined to fulfil their family dreams.
Heather had been told by well-meaning people that they should not have another child. Still, they believed and remained prayerful. Their fourth pregnancy revealed another boy, this time perfectly healthy, who they named Kolby.
Now a family of four, life continued normally in many ways. While pushed to the background, grief was still there and at times overwhelming, especially when the Fall season came around and pumpkins began to appear. Walking into Walmart one day, Heather collapsed in tears.
A firm believer in God, she asked Him for help on how to manage the grief and carry on.
From that questioning, Heather began to perform random acts of kindness. These simple acts filled her heart with “a deep joy in my soul.”
As that joy, and her beliefs, sustained her she asked herself what more she could do. In 2010, that question was answered as she began collecting pajamas, books, and stuffed animal donations for patients at Children’s Medical Center in Dallas. Those donations from friends, family, and her church filled a wagon, and she knew she wanted to do this forever.
That was the birth of Pajama Pages.
The following year, with help from many others including her nephew’s senior project, Pajama Pages saw $10,000 in donations for the young patients!
A few years later, Heather and Shay moved to Lubbock and Pajama Pages moved with them. Someone who knew their story reached out to the local news to feature Heather’s story. Although they knew no one in Lubbock the response was overwhelming! Covenant Children’s Hospital even took Pajama Pages a step further allowing Heather to set up a “shop” for the patients and family members to select what they wanted.
The joy she felt at delivering wagons of donations to Children’s in Dallas was surpassed by the personal experience of giving.
Today, moving back to their home in Forney, Heather is excited to have Pajama Pages back where it started.
Heather has learned a lot in the 30 years since she first saw that blister on Shealyn – she has learned about grief, moving forward, finding joy again, and most of all that “God always shows up”. As a result, Pajama Pages is the legacy of Shealyn’s and Shelby’s short lives.
Heather is hopeful to continue to grow Pajama Pages, turning sadness and sorrow into joy for patients and their families. You can help support this year’s Thanksgiving week donation:
- Amazon Registry: https://www.amazon.com/registries (Heather Earl 2024 Pajama Pages) These items are click and ship to Heather.
- Venmo: https://venmo.com/u/Heather-Earl (Funds are used to purchase items.)
- Contact: If you would like to get items directly to Heather. Message her on Facebook https://www.facebook.com/heatherearlpajamapages
- Group Project: Get your work family, your extended family or youth group involved to collect these items from others as a service project!
- Note: Pajama Pages would love the opportunity to provide a “shop” experience to young patients and their families. If you know a hospital that would be interested, please share this story with them.
Story by Melanie Mayfield, Blue Ribbon News. Courtesy photos.
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