In this journey, we have had many great people supporting us. When things were at their worst, we had many who sent us care packages, made meals, sent encouraging notes, and prayed fervently for our family.
However, when the days turn to weeks, and the weeks turn to months, it is inevitable that the support wains. In truth, having the constant attention subside was a welcome change. The support we received came with many mixed emotions. It is uncomfortable to be the center of attention.
We don’t want to be “special” anymore. All we really wanted was to be normal again.
The truth is, we are not a conventional family anymore. By outward appearances, our family must seem idyllic. A mom, a dad, a daughter and a son. Nothing overt that would indicate there was anything wrong. As we all know, outward appearances can be so deceiving. Our reality is that we are a family with two chronic cardiac conditions and many complications from the heroic efforts made to save their lives.
To this day, I still get questions about my son’s heart transplant. Questions like; “how long will he be on anti-rejection medications?” My response invariably is “as long as he is using his donor heart.” In my wife’s case most people try to equate her situation to something they are familiar with; a heart attack or blocked coronary arteries. To be honest congenital heart disease is something we know very little about. The issues we deal with are a result of genetics; the structure of the heart muscle itself and it can’t be fixed.
There is no cure. It will likely only get worse.
It would be easy to be bitter or angry. Some would say it is not fair. However, through our journey we have been shown so many amazing families who have journeyed with us. Some of their stories have tragic endings. A vivid reminder of how close we came to our own catastrophe.
Our experiences have been brutal and in many ways seemed more than we could bear. Many times I look through pictures and re-read things I’ve written and I think to myself “did this really happen?”
Thankfully our family is still together. Today we are OK. Our life is complicated and will always have the constant reminders of our medical complexity. However, we have so much to be thankful for and we WILL enjoy every day together because our future is uncertain. We’ve been given a gift and we will do everything in our power to enjoy every moment. We ARE better together.
Follow Donald at http://donaldlepp.blogspot.ca
Healthcare and Humanity 