Advocate Born with Half a Heart Turns 34 years old

HLHS Survivor 34: Stephanie Romer

Every year I do a Birthday Shoot. I love seeing how I have changed over the years. I use my birthday as my "new years" instead of getting too excited about the actual "New Years Eve" celebrations. My birthday is my real new year. It is when I re-evaluate myself, my goals, look back on how far I've come, all of my accomplishments, and organize the steps I need to take to make my dreams come true. Everyday I take more steps to becoming a more successful Patient Advocate, doing all I can as One.

Turning 34!! has been a dream come true. There are many changes coming this year - 2020 - as I take my career as an Advocate, Author, Speaker, and Coach to the next level.

I could not have done this without you - people who have supported me for so many years, have not stopped following or loving me even when I had months and years of horrible struggles - both mentally and physically - and could not always be of sound mind as I went through various types of PTSD therapies, antidepressants, anti-anxiety meds, support groups, and multiple hospitalizations for mini-strokes, increased issues with my heart, liver, and female organs. This is all related to CHD and stress. (which comes first, right?...the chicken or the egg?)

I understand I haven't always made sense. I am not right or politically correct all of the time, or sometimes used to be never. I don't always say and do the right thing. And because of me not being a "perfect" Advocate, I have lost supporters but in the end I have realized that is okay. I will never be perfect. I have had to navigate this Advocating thing completely alone. I have never had a CHD Advocate older than me to look up to. I have met some over the past couple of years who have helped me and inspired me, but for the 10 years of Advocating before that...I have been doing all of this on my own, figuring it all out based on getting to personally know every single one of you as a human being...not a number...not a statistic...an individual human being...and realizing how MUCH we all have in common, although we will always have our differences.

The more I interviewed CHD Adults the more I discovered there is a NEED to speak about all sensitive subjects and "non PC" Topics that Organizations, Hospitals, Doctors and other CHD Advocates were not comfortable speaking out about yet is what we needed to talk about the most: This is when I coined myself as CHD Advocate Speaking About Taboo Subjects. I had years of uphill battles, dirty looks, mean comments, and more but I carried on to fight for myself and us because we were all suffering in silence.

I have now, for 13 years, spoken openly about CHD AND: Sex, Drugs, Smoking Cigarettes, Alcohol, Tattoos, Anger for Doctors, Adult CHDers not being respected or heard, Trauma in Hospitals and from Doctors, PTSD, Anger, ADHD, and the very serious and life threatening Neurodevelopmental affects CHD has on our brains, Livers, Periods & Female issues, and more.

I am SO THANKFUL for ALL Advocates who have now felt they can be open about these subjects as well!!! We have been through enough, we do not need to be silenced on top of it.

Sometimes truth makes people uncomfortable...but it also saves lives. And that is my goal. To give us Freedom, a platform to speak out, and if I had to be the Trailblazer for this and lose a few "limbs" along the way...I'd do it all over again just to get where we are today and where I KNOW we will be: Free and Heard.

My Advocating journey has been such a beautiful, tough, scary, extremely painful, yet rewarding experience. This year I will be an Author of my first book: Memoir # 1. Title not released yet. In addition to that, the exposure I get and projects I am involved in will immensely change the direction of our community because of my strength, my passion, my voice, and my relentless motivation to create the BEST life for ALL of us while I have the energy to do so. As a family told me after I spoke at a MLH conference in 2007..."I truly think you have been chosen to be on the front lines of this battle. Thank you for everything you do." I will never forget that.

Thank you again for all of your support, love, messages, gifts, comments, likes, shares, and constructive criticism all of which has made me the woman I am today. Please keep it coming - no one is ever finished growing. I look forward to becoming a new improved Advocate, Author, Speaker, Coach, Wife and Woman every single month and year for the rest of my life.

There are no bounds on our expansion as human beings. Open yourself to all opportunities, and watch yourself unfold into someone you never thought you could be. At the end of each year I look back and say: Wow. I cannot believe how much I have changed in just 12 months. I never, in a million years, thought I would be who I am today. As mentally and physically healthy as I am today, and most of all...Alive.

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Please continue to support me by leaving a REVIEW on my individual Advocate & Author Page.

How have I helped or inspired you? Have I taught you or your child something that made you look at something in a different way? Have I helped you get through a mentally or physically challenging time in your life? What has helped you the most: My YouTube channel? CHD Legacy Website? Facebook or Instagram Content? My Personal Blog? Hanging out in Real life? An Interview we did together? Or other?

Review>> Like >> Follow to stay up to date on all BOOK LAUNCH Info and Advocacy Work - LOTS of new things coming in 2020 you won't want to miss!!

CHEERS TO ANOTHER YEAR OF HEALTH, HAPPINESS,

AND A NEW WORLD FOR CHD!!!!!!! <3 <3

*Keep scrolling past my pictures

to read what I have accomplished as a CHD Advocate thus far!

If you are looking for a professional, reputable advocate, writer, or speaker whose topics of discussion has no bounds, I am your woman!

A brief overview of my CHD Advocacy experience is as follows:

I have been a writer for Heartbeat Magazine, Project Heart, and ACHA. I have spoken at two Mended Little Hearts CHD conferences for CHD Parents, two CHD conferences at Johns Hopkins, one being on the Neuro-development of CHD children, and also on a Patient Panel for HLHS Survivors also at Johns Hopkins. I served on the CHD Advocacy Board at Johns Hopkins as well from 2016-2017.

In 2017 I was featured on the Tampa Bay Morning Show to discuss CHD. Also, in 2017 I created a Petition to put up signs and raise awareness about the neglect and abuse many of receive in Emergency Rooms. Following my petition, ACHA created a Webinar to raise more awareness about the importance of this subject!

I spent 2015-2016 creating and building CHD Legacy.

CHD Legacy was created to provide a platform for mental health

education, inspiration, and healing through stories you can find at

Voices of CHD. It is a safe, non-judgmental, platform to share your

truth and be heard. A place you can talk and write about anything

– Taboo Subjects encouraged! You do not have to use your real

name. Through this platform, our united voices will create change,

and leave a legacy for the following generations of patients,

medical staff, and loved ones. The stories consist of Adult CHD

Patients only, both living and deceased.

The overwhelming amount of pain and torture so many of us have

lived, has been suppressed and swept under the rug in the CHD

community. Real change comes from the pain, as much as the joy

shared. Where is the research concerning these taboo subjects

that affect every single one of us? We are creating it, but only if we

speak up!

Topics such as: smoking, drinking, relationships, sex, pregnancies,

miscarriages, abortions, suicide, self-harm, drugs, PTSD,

depression, anxiety, abuse, divorce, complicated family dynamics,

keeping a job, building a career, college, partying, keeping up with

friends, bullying, and the list goes on.

Remaining silent about these topics, perpetuates them.

Remaining "pc" or trying to maintain a certain image does not

create change or bring awareness to many topics that keep us in

a state of suffering. That cycle of suffering is passed on for

generations if not adjusted or changed.

Silence and repression does not help the current and future CHD

children, teens, adults, or families. We all share our stories to raise

awareness to help the CHD community to have what we never had -

answers!

Please support these brave contributors to the Voices of CHD

blog by reading and sharing their stories! Their transparency

reveals some of the true struggles we fight on the front lines of

the CHD battle. We are pioneers with no one before us speaking

out about many of these topics.

​I am currently writing my first book about surviving my life with

one of the most terminal forms of CHD, while growing up

in an abusive home.

As of 2019 I am a Patient Advocate and facilitating my own

Adult CHD Group at St. Joseph's Hospital in Tampa, FL. If you

are interested in learning more please contact me. The group

begins September 11, 2019!

I have had a You Tube channel for many years sharing my experiences

being an adult with CHD as well as interviewing other CHD Adults and having CHD Conversations.

I have many accomplishments and an abundance of knowledge

and experience I have accumulated over the past 13 years

researching my own illness, and interviewing over 100 CHD

survivors, as well as medical professionals, siblings, spouses, and

families.

To learn more about me, check out my blog that is updated periodically regarding various subjects called The Elephant.

Contact me for any of the following inquires:

o Interviews

o Content Writer

o Documentary

o Speaking Engagements

o Brand Ambassador

o To sign up to join the Tampa Adult CHD Group

o To be notified when my book is available online (print will be after the online release)

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Have I helped or inspired you

as an Advocate, Mentor, Coach, or with my website - CHD Legacy?

If so, please leave a Review!!

Follow on IG @ SROMERAUTHOR

YouTube @ StephanieRomer

Facebook @ Stephanie Romer

Inquires for Speaking Engagements, Content Writing, Interviews, Promo Modeling and More Please Email: Stephanie@CHDLegacy.com

Stephanie Romer

HLHS, 1985