Dear CHD Friends:

*Pic taken right before my Fontan in 1988, I was in heart failure and very sick, yet still determined to go down the slide & play with my cousins!

Through all of the pain, confusion, constantly hearing "I don't know" and there are no answers for "someone like you because we have never seen your anatomy," I was sure I would break. And I have, many times. Yet somehow I pick up the shattered pieces of my soul and put it all back together, but in a different way this time to try a different approach.

We must be our own doctors, do our own experiments, and see what works for us to figure out what we can and can't handle. It's all a learning process: how much can I take?

Life has broken me a thousand times and sometimes having CHD was the last straw in many of my decisions.

When life is hard and I find a solution to fix the fixable, at the end of the day I am faced yet again with the one thing I will never be able to fix: CHD.

This has forced me to learn things I never would have learned about myself and the world. Being forced to live with something that I have no control over will take its toll on and off, and on some days it feels like life isn't worth living anymore.

I am no longer broken into a thousand pieces and walking around traumatized, feeling it was even impossible to just take a breath. I have broken and rearranged my pieces so many times that I finally like who I am and am beginning to be proud of somehow surviving my life.

Educating myself on everything I have time and energy for and using resources available to me has changed my life. Inspiring others with my experiences and knowledge builds a closer community. Going through all of the processes of the feelings that CHD brings us through is essential in healing.

Allow yourself to be broken, shattered, and put back together as many times as it takes for you to love who you are. NO ONE else in this world, gets to decide your timeline for healing, the process of your life, and they definitely do not get a say in how those pieces get put back together. People will tell you how to live your life, put you down, and attempt to make you into their own version of you.

But that's not what we need in this world. We need you or version of you. Change happens by people being different and doing different things and along that journey many will disapprove, yet by this point the faith and healing processes that are the glue are now indestructible.

Be open to changing parts of yourself you think need improving, but never again give away the parts of you that make you feel safe, beautiful, strong, courageous, different, and best of all - YOU! ❤

I love you all more than I can express. Please advocate if you have the passion to. Do not let the mean people keep you from sharing your voice. Remember, there are always options to express yourself through my website anonymously if you'd like! You are not alone in any of this. Join my Private CHD Patient Forum if you'd like, reach out to each other, force yourself to go to a local CHD event and if you can't find one then contact ME and I will find the closest one for you! Never give up.


“Never doubt that a small group of thoughtful, committed citizens can change the world.

Indeed, it’s the only thing that ever has.”

– Margaret Mead

Thank you for your support.

Thank you for existing.

Your existence gives me hope.

Educate. Inspire. Heal.

Copyright © 2018 | By Stephanie Romer