“Hi, I’m Stacey, @thegutsycrohnie, and this is our beautiful daughter Iris Ann. We live on the beautiful island of Kauai and we love all things adventure.
It’s scary to think that there was a time that Iris had lost the ability to walk all together for months on end. Iris began to show symptoms at just 4 days old. We traveled blindly for three years before she was finally given the diagnosis of Crohns. Not only does she have Crohns and Ulcerative Colitis, but she also has life threatening food allergies.
As her mom, it is my job to show her how to navigate this world on her own. It is my job to teach her to advocate for herself. To be proud and confident of who she is. To wear her feeding tube with pride, and to eat all the salad and all the veggies because her body thrives on them. To teach her to ask all the right questions and move on from doctors that do not have her back. To be polite, but strict when it comes to her feelings. To not let anyone alter who she is.
Nothing holds her back. She has made me see everything just a little bit clearer – why we keep family close, why we love so fiercely, why community and support are so critical, and that we are never alone on this journey.
I seek to be the shoulder for the next mother who receives the news that her child has a chronic illness. To help guide them so they do not have to make all the same mistakes and go through the same hurdles we had to, to love on them and listen to them as so many of you have done for us. I also had thyroid cancer, but that’s for another day.
Rare Patient Voice has given me another outlet to advocate, support, broaden my reach to other families going through similar hardships and created a space for all of us to come together and push forward at an even greater pace. Thank you Rare Patient Voice for your compassion, kindness and support.
“There are no rainbows without the rain.” Deep breathes. Meditation. Rest and relaxation. Dancing, laughing, crying, hugging, loving and embracing each moment is what we practice. (Doing all of this in the rain? Bonus!) We see you. We love you. Let’s do this together. “
