My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.

Our senses have been tested for sure. Our eyes witnessed him go from diagnosis to a colectomy within 18 months, followed by three more surgeries in 6 months. Our ears have heard cries of pain and beeping machines at 3am in an ICU. Our noses have experienced the joys of an ileostomy bag and a J-pouch. Our mouths and hands have provided endless words of encouragement & praise and embraces of reassuring love to our son.

Like our adoptions, we’re thankful for this IBD journey. We’ve been accepted into an amazing world of families and the medical community who care for chronically ill kids. I joined the Atlanta CHOA/GI Care for Kids Family Advisory Council and ImproveCareNow to advocate, help and learn, because as another member said, “these are our people.”  

Our son is now in college, learning to navigate his IBD journey and sharing it to help others. Sharing our journey gives us joy & hope.


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