Tuesday, May 21, 2013

Guest Blog by: Lisa Schaffer

Dear Friends:

In honor of Mothers' Day, I invited a Heart Mom to prepare a guest blog for Baby Hearts Press. We are very blessed that Lisa Schaffer was willing to share her story with us. Please take a moment to enjoy her blog site as well!


My Story
By: Lisa Schaffer

It was early 2006 and I was standing in the pediatric specialty clinic lobby in front of a large display rack of cardiology brochures and pamphlets.  I saw information about a variety of heart defects including pulmonary stenosis, septal defects, and transposition of the great arteries-all of which affected my newborn son in some form.  Our new pediatric cardiologist walked by, paused, then turned and looked me in the eye.  “You will not find anything on that rack that is even close to what you are dealing with,” he said solemnly as he patted my shoulder.
My search had actually started months before my son was born and consisted mostly of snippets of information I had pieced together.  That’s how I eventually learned about Anna Jaworski; I found her website.  I’m not sure exactly when I connected Anna, Baby Hearts Press and CongenitalHeartDefects.com. I think that happened much later when Facebook became such a huge CHD support source.  I remember CongenitalHeartDefects.com as one of the websites I used to learn about a variety of heart defects, along with additional resources to further my education.  Eventually, I found other mothers like me, mothers searching for information about complex CHD.

Seven years later, I feel well-equipped in my knowledge of CHDs.  No, I don’t claim to know it all and I certainly do not understand the complicated balance my son’s cardiologist must maintain in order to keep my son’s heart in working order.  But, I know enough to ask the right questions and to educate myself, thanks to those who were passionate enough about CHD (like Anna) to devote their time and energy to create websites and support forums, and to write books that further CHD awareness.

My name is Lisa.  My blog is called, “All That and a Box of Rocks.”  It is about … everything -- my crazy, happy life.  As complicated as it sounds, it is a very happy life.  I write about life with six kids (five living). Among them I have one with Autism, one with Asthma, one heart warrior with Autism, one heart angel, and three almost normal teens/young adults. (I kid…what the heck is normal, anyway??)

I am one of the few mothers you will ever meet with two complex heart kids—it just does not happen that often. My boys were born thirteen years apart with variations of TGA and hypoplasia.  Even though doctors tell us two cases of TGA variant is definitely genetic, our testing reveals nothing out of the norm.  Twenty years ago, I barely had a chance to understand CHD-the Internet at home was rare, limited to the rich and famous, and my son died when he was only nine weeks old.  He never left the hospital.  When I walked through the hospital exit that last time, I shut the door on CHD…or so I thought.  I never expected to relive CHD.

I started my blog in 2006 for a variety of reasons: family, memory preservation, homeschooling, faith, life…and it has evolved over the years to become a virtual mind dump.  Sometimes I blog a lot and sometimes I do not.  My goal is to become more consistent.  I am planning to start a couple of regular series:  Living with CHD-Moments of Life as a Heart Mom and Living with Autism-Moments of Life as an Autism Mom. I think we learn so much when we share our deepest thoughts and real-life experiences.  

If you feel led to wade through the pieces of my life I dare to share, please join me at http://lisaschaffer.blogspot.com where I will be keeping it real, one blog post at a time.

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