Discovering your child has Crohn’s disease feels shocking. Discovering both of your children have Crohn’s disease feels devastating. There were so many unanswered questions, some answers still unknown after nearly five years. What does this mean? How will this impact our children’s lives? How is this treated? Will they live a normal life? What did we do wrong as parents? Could we have prevented this? Is this our fault?
Our daughter Jaycee was diagnosed with Crohn’s disease in 2017 at the age of seven and our daughter Allyse (Ally) in 2018 at the age of four. The realization that the complaints of joint pain, lethargy, digestive issues, and slow growth were all attributed to a larger underlying cause was overwhelming. We were launched into a world of outpatient exploratory procedures and an array of medications that didn’t seem to yield favorable results. Treatments ranged from diet adjustments, daily oral medication, infusion therapy, and home-administered injections. We pondered difficult decisions of administering medications not approved for pediatric use in a continued effort to find something that worked. It was heartbreaking to watch our girls endure not only the pain of the disease, but the needles, anesthesia, dietary restrictions, and side effects of the medications. Our lives seemed to center around keeping a bathroom close by, hospital visits, medical appointments, labs, treatment, and uncertainty.
We could tell endless stories about the difficulties of prepping a four-year-old for a colonoscopy, teaching a child who’s never taken a medication to swallow daily pills, learning to administer injections at home, and the impact on mental health following an anaphylactic reaction to an infusion therapy medication. But through it all, the greatest thing that we have learned is that children are resilient. We’ve all heard the saying, but our girls have demonstrated it repeatedly throughout their journey. When we as parents feel hopeless, scared, and defeated – they display courage, endurance, and strength. They are there for us as much as we are for them. We have carried each other through the challenges and fears faced when battling a chronic disease.
Through it all, we have found encouragement and support through the Crohn’s & Colitis Foundation, its staff, and its members. We have found comfort and gained invaluable knowledge through its networks and have made connections with others that embrace us and share their stories – creating a sense of normalcy for our girls and for us. We remain grateful for all that we have and are passionate about the mission of the Foundation and the impact that it has had on our family’s journey.