The Spark That Set The Flame

I was a reluctant participant - I was perfectly content to let others lead the way. It wasn’t that I didn’t care, I just didn’t think I had anything of significant value that I could share. That’s not false modesty, I was literally fumbling through trying to understand what it meant to have two kids with a chronic disease that had no cure. That was until I began to partner with my local IBD care center and the larger ImproveCareNow community. 

It all started six years ago, when my care center asked me to join a small local meeting where we would be discussing what we would change to improve IBD care if time and money were not factors. At this point in our IBD journey, my two oldest children were newly diagnosed, and I knew very little about Inflammatory Bowel Disease. I agreed to attend because I thought maybe I would meet some other IBD parents. Honestly, when I first got there, I felt like a fish out of water.

To start with, the meeting location had been changed and I wandered aimlessly around the hospital for about 40 minutes trying to find the new space. When I finally found the room, the meeting had already started, and I was not on the RSVP list. I was still welcomed, and my name was hastily added to a folder. As I scanned the room, I realized I only knew our kids’ physician and he was seated on the other side of the room. 

I felt awkward, anxious, and uncomfortable. I didn't want to cross in front of this room full of people to find an empty seat. I was afraid of making too much commotion. In that moment, I wanted to fade into the background or turn around and walk away. But, through my discomfort, I noticed something that held me there.

I noticed that everyone around me seemed to have years of experience and knowledge that was foreign to me. More importantly though, I noticed our care team and other parents were listening intently to each other’s wisdom, experiences, and perspectives. I stayed to listen, too. Eventually I felt comfortable enough to share my perspective, and they listened to me – like it mattered.  

A few months after this meeting, I was contacted by my care center and asked to attend my first ImproveCareNow Community Conference. Initially, I was a bit confused - why was I being asked and what was expected of me? Thinking back to that first local meeting - to my experience of listening and being listened - I felt intrigued about the possibilities and said yes. What I discovered at that first conference has fueled my passion for the past six plus years - it was the spark that set the flame for me!

Today, through my activism both locally and nationally with the ICN network, I’ve learned more than I would have ever dreamed, met some of the most extraordinary humans, partnered with incredible people, and most importantly, helped improve the care delivered to IBD kids. It has been rewarding in ways I never would have imagined, and I want that same feeling for YOU!!!

To truly improve care for kids, we need the VOICES OF ALL to be represented. We cannot make meaningful progress with the same voices leading the parade. I’m asking YOU to thoughtfully consider becoming more active and engaged either locally or nationally - or both. Your LIVED EXPERIENCE makes you uniquely qualified. Having the ability to respectfully work with others, committing to the process, being open to other perspectives, and learning are the only prerequisites.

Right now there are many opportunities for parents and guardians of young people living with IBD to get involved in the Parent Working Group of ImproveCareNow. We are in the process of redesigning our group to maximize our ability to contribute and to improve IBD care - to ensure that all young people with IBD can thrive in their lives. Please consider becoming an active participant - the first step is to sign up.

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Get #InTheLOOP with more posts by Parents on the blog >>

Join Jill and the Parent Working Group - learn more & connect at improvecarenow.org/connecting-parents

Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with our stories on the blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie

• Invite someone to download our free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)