The Mom who wouldn't stop asking questions.
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Photo shared with permission by the writer AND her son. Thank you, both.
Keep going! We are so proud of you!
Every parent’s advocacy journey begins somewhere. Sometimes it’s with a diagnosis. Sometimes it’s with a question no one else seems to be asking. And sometimes it’s simply a mother refusing to believe that “everything is fine.” This story is about learning to trust that inner voice, finding the courage to ask one more question, and discovering that being “That Mom” isn’t about being difficult—it’s about loving your child enough to keep searching for answers. Thank you for sharing your journey with us.
Introduction
What this story reminds us
Trust your instincts.
It’s okay to ask one more question.
Advocacy is an act of love.
You know your child better than anyone else.
Hope can exist even when the path is uncertain.
When I saw the words and meaning behind your “that mom” post, it immediately resonated with me!
I am “that mom” too! My son was 12 when he was diagnosed with Ulcerative Colitis in 2024. It took nearly 9 months of repeated trips to doctors and specialist before anyone was convinced something was deeply wrong with our son. I knew his inability to eat without getting nauseated and constant stomach aches meant something. Then he started running recurrent random fevers and was constantly tired. Our pediatrician said “it’s probably just hormones” and that didn’t sit right with me. A week later we were on day 7 of random fevers daily and we took him to the ER. Blood work came back mostly fine, his hemoglobin was a little low but nothing was screaming IBD. We followed up with infectious disease, spent weeks running a million tests and still nothing. So we waited and our son lost more weight and got more tired. One month later he started pooping straight blood and we were finally connected to a GI dr.
From that moment on I began to learn an entirely new language and became an expert on a topic I never imagined could change our lives so drastically. My husband and I are both people pleasers, we had previously lived our lives with the belief that doctors knew everything and I rarely questioned them. To be honest we’ve never had big enough concerns to have a need to question our own personal medical care. But here we were, and quickly learning that doctors don’t always know what to do when you have an IBD kiddo who doesn’t automatically respond to traditional textbook treatments.
We have had family who don’t understand that diet can’t fix everything, friends who couldn’t fathom the ongoing struggle between living a normal life and walking in grief over our son’s childhood being altered forever.
I have spent the last two years, advocating, questioning, and pushing for the best care for our son because I am now That Mom. My gut is almost never wrong, and when my mom sense tingles it’s almost always right.
Our son is still not in remission or really even close. His case is hard and despite starting dual therapy recently we are still not where his doctors want him. We will be discussing surgery and surgeons soon and once again I will be that mom. The one who asks a million questions and watches a million ileostomy videos because my kids well being relies on it.
I’ve learned that our children’s best advocate is us! Strong parents who work hard to facilitate hope and never give up on chasing down help for them.
-M,D. 100% That Mom
Photo shared with permission by the writer. AND her son.
Thank you, both.
We are cheering you on!