Steve at Adventures of a Funky Heart (go on and check him out, he is awesome) is having a blog carnival about heart defects. I obviously can't write about having a heart defect but I can write about having a child who has a heart defect, especially since Evan is not old enough yet to write for himself.
When we found out about Evan's heart defect my world turned upside down. All the expectations that I had for my firstborn son were shattered. We could be hopeful that he would survive his surgery but it was never a guarantee. We also had to face the fact that even if he did survive his life would be vastly different from what a "normal" kid's would have been. There is still a lot of uncertainty in Evan's life even now, only time will tell if he will grow up into an independent adult who is able to have all those things that parents hope for their children. The specter of him needing a heart transplant in the future is still there hovering over us.
With all those challenges have come gifts. We could not have asked for a better cardiology team to get him through his tough surgeries. There was no time to research and pick them, we ended up just going where our insurance sent us but even though it was a small program that may have been overlooked by more picky people we were made to feel at home. I never felt stupid when asking any questions. I never felt like I was being rushed through an appointment. They took the time to treat Evan as the child he was and were willing to work around his occasional stubbornness. The hospital where he received his surgeries had an amazing PICU where you could see the doctor on duty and never had to wonder who was making the decisions about many aspects of your child's care. Added to that were wonderful nurses who would treat me as an equal in the care of my child. In addition to his we have had many wonderful therapists who have helped Evan recover from his stroke.
We do not know what the future holds for our family. We can sleep easy knowing that we are surrounded by wonderful caring people who are willing to make sure that Evan gets the best of care.