AddThis script

Wednesday, December 07, 2005

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.

4 comments:

  1. You are an amazing woman--whether you wear a label or not--and I think that all this searching for what gives you happiness and now the news of TICs impending surgery (which, I don't care what anyone says, would scare the shit out of me) is tied together.

    You my friend, must write about this experience is sort of a memoir form. Really. From the beginning, pregnancy and your dreams of what your family would be like, then birth story, then NICU, then various surgeries, EVERYTHING. Because you are going to reach people--others like you--that need the support. And you know what? Then you are helping and not wearing an everyday label except MOTHER. Which is perfectly fitting.

    My thoughts and prayers will be with you on the day of the surgery-- TIC is one strong little dude, I know he's going hang in there and be kicking again with that wonderfully bright smile. He's such a cutie!

    ReplyDelete
  2. Maybe one day when things aren't quite as crazy and scary and exhausting, you will be able to write even more extensively about your whole experience, and in that way, help countless numbers of other families who will feel like you felt when looking for support. And then you will see the even bigger purpose of being a writer. :^) (PS I have to say that I enjoy having my name in print as well!)

    ReplyDelete
  3. I'm thinking about you and your family.

    ReplyDelete
  4. You're a Mom who loves her son. That label rings loud and clear from your very existence, and no pin or wristband could ever explain it better. Best of luck to you and Riley.

    ReplyDelete