Managing potty training difficulties with my son with Alagille
It's been a bumpy road, but we're not alone
Potty training, in my experience, has to be one of the hardest parts of parenting a young child. For my 4-year-old son, Finley, who is quite strong-willed and willing to voice his opinions, our journey with potty training has been filled with ups and downs.
Obviously I want him to reach the finish line when he’s ready. But I’d be lying to say I’m not ready for that day to arrive. And while we navigate his journey of learning how to listen to his body, his Alagille syndrome looms in the back of my mind.
Finley was diagnosed with Alagille syndrome at 4 months old. My wife and I aren’t carriers, so for Finley, the condition was caused by a spontaneous gene mutation. When we received his diagnosis, we faced a huge learning curve. Learning about his rare liver disease, and the larger rare disease world, was and continues to be quite the journey.
I’m most thankful for the interpersonal interactions my family has had. Connecting with and learning from others, especially those who speak your same rare disease language, is invaluable. Reading scholarly sources only gets you so far. It’s so interesting to hear about others’ experiences and see how they compare with our journey — especially when it comes to potty training.
Finley enjoys some of his favorite foods. (Photo by Jay Sandstrom)
Doing this training with Finley has been a bumpy road. Sometimes he’s excited about the prospect of wearing underwear. Other times he screams at us because he doesn’t want to go on the potty. As I’ve said before, he’s not afraid to share what he wants. I truly believe this trait will be amazing as he gets older, but right now, it sure can frustrate me at times.
None of this behavior is unique to Finley. We’ve found that other Alagille families have experienced similar challenges, and that the training took much longer than they expected. Small, frequent accidents would happen, and with liver disease, bowel movements are another discussion entirely.
While nobody can predict how and when we’ll cross the finish line with potty training, it’s nice to hear that we’re not alone in experiencing difficulties. The rare disease world can feel so isolating at times. It’s helpful to connect with others and learn about those shared experiences.
Finley is progressing well and doing better every day. We celebrate the days with no accidents and coach him when he has one. No matter how long it takes, I’m proud of him and how he’s grown in his four years of life.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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