Dear CHD,

Updated: Aug 20, 2020


In honor of World Heart Day <3

Dear CHD,

Oh how I love and hate you.You have brought so much joy and insanity to my life. I honestly have no idea what life is like without you. And I don't want to know.

Why?

Because I have learned to appreciate all of the gifts CHD has given me and the biggest gift in my opinion is the WISDOM, knowledge, and will to fight.

Because of you, my CHD friends and I have a world view, appreciation for life, and understanding most take 50+ years to see. We are just born ready to conquer the world. We were put here for reasons that will take our entire lives to figure out, and that's the best part for me -- the journey.

Even through the hell CHD brings, I am extremely grateful for the physical, mental, spiritual journey that having CHD has brought me on. It has forced me to see sides of myself and others I may have never gotten to know. I have both enjoyed and been terrified of exploring every part of who I am through my adulthood and trying to figure out what life is like being an adult with complex CHD. Yet afraid or not, CHD has taught me to face fears head on and keep walking through the fire even if it burns because as I now know, on the other side is freedom and a wisdom that I cannot explain.

What better way to test who you (and others) truly are than to constantly be faced with death? It hasn't been all sunshine, kittens, and rainbows, but it does put everything in life in a higher contrast with brighter colors.

All of the mental struggles, what having CHD does to my relationships, hospital stays, ER visits, procedures, and the not knowing is why I hate you. However, I never thought I'd say this either, but I am enjoying getting to know my weird body and self more and more which makes the bad a tiny bit easier to manage.

I love you, I hate you, I don't want to know what life is like without you. Maybe that's weird, but that's me.

Happy Heart Day friends. ❤💃🤘

Love, Stephanie HLHS: 32 yrs old www.chdlegacy.com Educate.Inspire.Heal.

#chd #hlhs #defeatchd #chdlegacy



60 views0 comments
1st Generation Parents
First generation parents of complex and single ventricle congenital heart disease and defect survivors. They are the soldiers who taught us how to fight. Thank you.
Heart Caths & Warrior Blood
Heart catheterizations are a minor invasive procedure to check out hearts to see from the inside. It is comforting to be able to see a heart cath lab before you have a catherization to ease your mind. Stephanie Romer writes about her experiences.
What to Tell A CHD Child...
Keeping the innocence. How much and what should I tell my baby or child with congenital heart disease or defect. Parents, advocates, and doctors can discuss this together as well. Stephanie Romer shares her thoughts on this.
CHD Brain & ADHD
CHD Brain damage comes out in many forms - Executive Functioning issues that can look like and be diagnosed as ADHD, Learning Disabilities, Behavioral Issues, and more...Stephanie Romer writes about her experiences.
34 yr old HLHS Survivor
HLHS warrior turns 34 years old. Hypoplastic Left Heart Syndrome. Congenital heart disease survivor. Stephanie Romer's 34th Birthday - 2019.
Life with 5 CHD's
Stephanie Romer Living and loving life with five congenital heart defects. Hypoplastic Left Heart Syndrome, Transposition of the great arteries, atrial septal defect, ventricular septal defect, mitral valve stenosis
Learning Disabilities & CHD
CHD and Learning disability...Stephanie Romer writes about her experiences and thoughts.
Illness or Drug Addict
Treated like a drug addict in the Emergency Room for being young with a chronic, invisible illness. Stephanie Romer writes about her experiences.
mestresstest_edited
With CHD we have to go through constant testing. Stress tests is one of those. Living with Congenital Heart Disease and HLHS - Hypoplastic Left Heart Syndrome - makes it more difficult. Stephanie Romer writes about her experiences.
31 yr old HLHS Survivor Making Waves
Stephanie Romer story by Project Heart living with half of a heart, twice the fight. Living with HLHS, TGA, ASD, VSD, MVS. Advice for parents and congenital heart disease and defect survivors, patients, doctors, cardiologist.
Show More

Do you have a coach to help guide you through your individual or family struggles?

Chronic Illness Coaching: 

Illness | Wellness | Trauma

  • Facebook
  • Twitter
  • YouTube
  • Instagram

Please see Terms & Conditions for all privacy policies and disclosures.