Thank you for visiting the Mighty Hearts page.
I am Micah's mom.
We found out at 20 weeks that Micah would have trouble with his heart. Exactly how much trouble? Well, that wouldn't sink in until later.
Micah underwent his first open heart surgery at just a week old. His second surgery at eight months old. A week after that surgery is when my world began to fall apart.
After trying to recover from heart surgery, Micah contracted a virus and infection that led to complete respiratory failure. I never thought we would spend so much time in the hospital. However, after 92 days, we finally brought our son home.
After watching Micah almost die in the hospital, I thought we had been through the worst of it. Going home was supposed to be happy, and it was, for a few days. Then the emotions and stress, the lack of sleep and thoughts of my family's future began to catch up with me. Our marriage was experiencing some struggles. The turmoil of hospital life and transitioning to a new home life began to show in my older children's behavior. I was beyond exhausted and started to feel like the life I knew and had planned for my son, my family and me as a whole ripped apart in front of me. Those pieces lay scattered in view as if begging me to put them back together. However, I couldn't. They were not going to fit together like before, and I was not ready to face that.
Over the next few months, I struggled to find any happiness in living with CHD. I was surviving, but barely.
Luckily during this difficult time, a community of friends, family, and even strangers offered help. We accepted it. They brought meals, stopped by to check on us, often watched my two oldest children while I ran Micah to his many appointments and started a financial donation page for us. We were even able to take advantage of some much-needed counseling services to help manage our new life.
However, the reality is many CHD families do not have a community of support and many family resources require out of pocket costs that insurance and state programs cannot cover, or that take so long to kick in; they are irrelevant when the time finally comes.
I feel fortunate enough to have a community of support that reached out to help us. However, it has been, hand down, the most difficult time of my life. I know additional resources could have helped us avoid some unnecessary heartaches and anguish, and care for our family better.
Our family's journey with CHD is only beginning, and we are still finding our way, but as we continue we feel a sincere desire to help others going through the same experience. That is why the Mighty Hearts charity exists.
Join us in the journey,
Executive Director of Mighty Hearts & mom of a CHD warrior