As a patient or caregiver, I found it extremely important to reach out to others who have been in similar situations.
Is that child as sick as mine?
Health Union and internet support communities were not yet created when we were thrown into the heart failure world, especially not the pediatric one. I would sit in the cardiac waiting rooms and observe the patients, trying to figure out their stories. Is that child as sick as mine? Do they have the same meds as us? Do they think the doctors are the best? Does that mom have panic attacks like I do? And I always looked for reassurance that the older kids were going to make it!!!
Amazed at their courage and strength
It took me a while to work up the nerve to talk to people. I guess I was afraid of the answers. One mom in particular helped me a great deal. Her son had already had a heart transplant and just survived his second. They lived in the same state and our doctors arranged an introduction.
I was amazed at this family’s courage and strength. Their story was as serious and traumatic as ours, yet they had an ease to them that we definitely didn’t have. Through many late-night talks in the ICU and phone calls where I was in full-blown panic attacks, she talked me off the ledge. I watched the way they lived their life and I pleaded with her to tell me how she could possibly go on knowing that her son had already had 2 transplants at the age of 9. I was new at this and quite frankly was a mess.
The light of my life
What she told me I will now tell you in my words...don’t be willing to give up your dreams for your family or your loved one in heart failure by panicking every second and living in a constant state of fear and anxiety. She said she lived in the here and now and made a conscious choice to not focus on the what-if’s because they just rob you of the time you have now. She was right! If I had given up, and believe me I wanted to, I would have lost 25 years of the most precious moments with my daughter. She did make it and continues to thrive.
She and her sister are the light of my life and I’m blessed to be their mom. I’m choosing to be happy, it’s not easy, often I fall apart but that’s ok. What I have to remember is not to unpack and live in crazy town, it’s not where I want to be. I would encourage you to reach out to our Health Union community; ask others how they do it, what works for them, or ask for help when you can’t focus on the positive. We are here for you and will pass on our knowledge and hopefully you will get to do the same someday.
What can someone do to better support you? (Choose all that apply)