Matters of the heart

When my son was born and his health problems unfolded before us in those endless days in the NICU, I vowed to change my life, my purpose. Not only would I be a mother, I would be an advocate for my son. I would raise awareness about congenital heart defects and raise funds to help advance technology that may eventually extend his life.

We had little luck (and no help from the hospital social worker) in finding local support groups for families like ours. I vowed with every ounce of my being to search out other families and befriend them and together we would start a a support group for lost and hurting families like ours.

Months passed, and while the tears seemed to linger behind every thought and action, they were not always openly present as they had been in those first several weeks. I was adapting to our new situation. I was mourning the life I had hoped for my son and the life that I thought I would have as a parent. We eventually found a support group three hours away and it was my goal to attend every meeting, every function. But even then, as the months passed and those initial gunshot wounds of my son's birth healed, I started to move those ambitions in the background.

Earlier this week, father-in-law blogged about being a cancer survivor and how he doesn't necessarily identify with that label. It got me thinking about how I relate to and live with the label of being the parent of a child with a life-threatening heart defect.

As my ambitions shifted, I realized it was because I didn't want to be labeled either. More than anything I wanted to live as normal of a life as we could muster, an anonymous life. I wanted to do normal things with my son, even though he's not totally normal. I wanted to blend in and be thankful in less outward ways. I wore a "Hope for Heart Defects" wristband for a while, but stopped doing it because I didn't like branding myself in one way or another. Mostly I still care strongly about those initial ambitions, but they've taken a backseat to living my life.

R's defects were jolted to the forefront this week because his cardiologist told us that it's time for his third open-heart operation. He will have a heart catheterization at UCSF on March 2, and his Fontan surgery on March 9. R's dad posted some helpful links about those procedures here.