Posted by ImproveCareNow™ on November 16, 2023
Ignite Talks have become a tradition at ImproveCareNow Community Conferences. There is always so much enthusiasm for these brief and breathtaking personal narratives. And we continue to feel gratitude and awe for the improvers who speak from their hearts and share their real life experiences with pediatric IBD. We are grateful to Tomiyo for her story about caring for her daughter with severe IBD and the emotional toll it had on her. Speaking to a live audience was an act of real bravery for this introverted parent, and it represents a promise that Tomiyo kept to herself to be involved and to help other caregivers who might be suffering like she did. Tomiyo's ignite talk highlights the importance of support, community and advocacy for IBD caregivers and the power of stories to drive us all to create a better for future for those who need it most.
Be inspired by Tomiyo's #IgniteTalk 🔥
I’m Tomiyo Williams, and the most challenging chapter in my life began when I was catapulted from the realm of ordinary parenthood into a world of medical complexity and emotional turmoil. It all started with a diagnosis that would change our lives in ways we could never have imagined. At the age of 14, my daughter, Skye, was diagnosed with Inflammatory Bowel Disease.
In January of 2015, Skye began complaining of mild stomach pain and noticed blood in her bowels. Concerned, we consulted with her pediatrician and made multiple trips to the Emergency Room. Each time, we were told it was a mere "anal fissure" or a "hemorrhoid." We followed the advice of medical professionals, hoping it would resolve itself with time. And for a brief period, it seemed like it did.
However, our world collapsed six months later as Skye's health dramatically deteriorated. She exhibited alarming signs of paleness, lethargy, and incoherence. Her father promptly rushed her to the closest emergency room.
Following the initial lab results, it was discovered that her hemoglobin was dangerously low, necessitating an immediate blood transfusion. Two days later a number of tests and scopes were done. The diagnosis was far from what we could have ever imagined. We gathered into a private family waiting room at the hospital and the GI advised us that Skye had Ulcerative Colitis, and the majority of her colon was inflamed. I remember hearing this news and looking up to find her father in the corner, wiping away tears and shrinking into his own world.
I was not prepared for the road that lie ahead.
For the first year, the drug mesalamine managed her condition without issues, but in 2016, her medication stopped working. The next four years felt like a never-ending nightmare as she tried various treatments, immunomodulators, and biologics, with none of them delivering long-term relief. The majority of her high school years were spent in the local children's hospital. I found myself packing an overnight bag in our car, knowing that every GI appointment would most likely result in yet another extended hospital admission.
Although I was aware of my daughter's severe illness, it seemed unreal, and for the first two years, I struggled to accept it. Eventually, I gathered the strength to approach her GI and asked a question that weighed heavily on my mind at that time. I asked him, "In comparison to other patients seen at this practice, can you tell me how sick my daughter is?" and he responded that "within their practice, which attends to approximately 1,000 patients, Skye ranks among the ten most critically ill individuals at that time."
I was rendered speechless, overcome by devastation and a profound sense of feeling overwhelmed.
The treatments continued to fail, and Skye’s health continued to decline. On October 30, 2017, she underwent a total colectomy. In September of 2018, she was re-diagnosed with Indeterminate Colitis with Crohn's presentation, and in March 2019, just two weeks after her prom, she received a permanent ileostomy. Because of the complexity of Skye’s IBD, it took a total of five years for her to gain remission. But while her physical health improved, her mental health spiraled downward, and the battle with body image issues became a daily torment.
For her father and I, the emotional and mental toll was indescribable. Sleepless nights turned into years of sleep deprivation. A few medical checkups evolved into indefinite hospital admissions. At some point, I realized that the future we had once envisioned for Skye had grown murky and her options in life seemed to have been profoundly altered.
We were broken.
From 2015 to 2018, during the period when Skye's condition reached its lowest point, I can confidently say that the count of "good days" I personally experienced in those three years was fewer than ten. By 2017, I had completely lost touch with my own identity as my existence revolved around constantly handling my daughter's medical emergencies and attempting to maintain some semblance of order in our household. I was grieving the loss of the life that we had before Skye’s diagnosis while living in a constant state of denial.
As if that wasn't enough, I received a diagnosis of depression for myself and chronic PTSD directly resulting from witnessing Skye's ongoing pain and suffering. I found myself trapped in a profound, dark abyss, struggling to discover a way to emerge from its depths.
Amidst the chaos of hospital visits, medications, and heart-wrenching moments, I reached a point where I had to make a choice. Despite the difficulties posed by my mental health at the time, I made a conscious choice to become a part of SOMETHING, but I was unsure of what that SOMETHING was. At this point, I began therapy and my therapist along with my mother, suggested that I find a support group of other parents who were going through the same thing. Being an introvert, it wasn't an easy decision, but one that I felt an undeniable compulsion to embrace. I recognized that I couldn't simply remain passive while my daughter endured unimaginable suffering and I couldn't allow other parents to navigate similar challenges without the support they deserved.
I’d experienced so many moments lost, and feelings of hopelessness throughout this journey.
It was during one of those moments, sitting in the lobby of the GI Care for Kids infusion center in 2018, that a clinician from ImproveCareNow walked into my life. He asked to speak with me privately in the hallway and we spoke in depth about Skye's condition. It was this encounter that led my daughter and I to join the Parent/Family Advisory Council.
I was initially hesitant because I’d never shared how I felt with others, but I took the plunge and became actively involved. And THAT decision changed my life.
I became involved with the ImproveCareNow Parent/Family Advisory Council and the ICN-DEI subcommittee. I attended our local meetings and made myself available for peer-to-peer support and mentoring. My choice to become involved with ICN was driven by a deep sense of responsibility, of knowing that I had to do something to help improve the lives of children like Skye, along with their families.
What I found within ImproveCareNow was a lifeline, a community, and a wealth of resources that cradled me through the darkest hours. I was no longer isolated. I stood among other parents who understood the profound anguish endured when your child is entangled in the relentless battle against a chronic illness. I found a community who could relate to my journey marked by tears, sleepless nights, and the endless quest for answers. And through my involvement with ImproveCareNow, I found a reservoir of strength and resilience that helped me defy and overcome the harshest of trials. I felt empowered, and with time, I developed the confidence to share my story with other parents, and then on public platforms.
Through ImproveCareNow, I found my purpose--in advocacy efforts, in raising awareness about IBD, and in fighting for better healthcare for children living with IBD. THIS organization gave me the tools to channel my experiences into making a positive impact. In addition, by helping others, I found a profound source of healing for myself.
I became engaged in legislative advocacy and gained recognition for my work on the Safe Step Act in my home state of Georgia. This ultimately led me to become involved with The Color of Crohn’s and Chronic Illness, an amazing nonprofit organization that raises awareness to racial disparities in healthcare, where I lead the advocacy efforts on both the state and federal level, in my role of Manager of Community and Advocacy.
But my story is not unique. It's not a solitary struggle.
The challenge we faced, and still face, is shared by countless families around the world. It’s a challenge that connects us and binds us together. As parents, caregivers, providers, and advocates, we all know the pain, the frustration, and the hope that comes with caring for a child with chronic illness. We all share in this challenge.
Skye is now 22 years old and has been in remission for 4 years. She is a thriving young adult who can do many of the things that young adults do. I am grateful for the guidance and support that we received from the ICN community over the years. I’d like to personally thank my dear friend Heidi for all her support and guidance through the years. In addition, I’d like to thank Dr. Blumenthal, Dr. Dykes, Dr. Gold and Claire Talmadge for the outstanding care and support that they provided during our most darkest days, while my daughter was in their care and beyond.
In conclusion, our personal narratives are not just stories; they are the seeds of change. The challenge is real, and the choice is now. By acting together, we can create outcomes that inspire others to take action. My story and ALL of our stories, are testaments to the power of choice, the power of collective action, and the power to create a better future for those who need it most.
If you're going through a similar journey, you are in the right place, and I urge you to reach out for support. Remember, you are not alone. Your story has the power to inspire others, and together, we can make the world a better place for those facing chronic illnesses.
Thank you for listening and may our collective strength and resilience light the way for a brighter future.
💚💙