Xtra Special Heart: A soft place to fall...

Life never stopped...my world crashed around me, but life never stopped. I took a week off of work, but lesson plans still needed to be written, loose ends needed to be tied. Nate had clients that still had deadline, gigs still needed to be played..Life never stopped. Bills needed to be paid...Life never stopped. I struggled with how to tell my family, my friends, my co-workers. Would they think that I had done something wrong, would they wonder what horrible thing I did in my past that would result in my being "punished" this way. We knew NOTHING about HLHS....so I was pretty sure that my inner circle would also know NOTHING!! I hit my knees and just starting begging, pleading with God to please change this path..didn't he know that I was not going to be able to do this...I was not equipped to deal. This kind of thing was not meant for me. I was was too weak. I spent a week in bed...crying, praying, holding onto Nate like he was a raft in the middle of the ocean. I look back at that time now and think..how selfish of me. He never had the opportunity to break because he was too busy picking up my pieces. He was my soft place to fall....

We finally started educating ourselves, excepted that this was our reality and to be honest we really pulled it together. Our families rallied around us and held us together. Our friends kept our spirits up. I was determined not to have a baby shower, but my best friend convinced me that I had to be positive and not give up on my baby. I don't think she knows, even now, how much I needed that kick in the butt. We had a plan for our son, he had a name, he had a crib and freshly painted walls. He had all the essential and not so essential things that a newborn needs. We had a great team of doctors. We had a amazing hospital. Xavier was growing and his heart was holding stable. CHOP and our local cardiologist kept a close eye on all of us. We were being taken care of on all fronts. All of these people were my soft place to fall....

Xavier has had a pretty awesome year (almost). He has done pretty well. I take comfort in knowing that his year was harder on all of us then him. I still lose my breath when I think about how fast he rebounded. I am often caught off guard by how amazing he is doing. To look at him, he looks happy and healthy. And I guess in the world of CHD he is both. But no matter what, he will always have half a heart...nothing will change that. He will always need extra care. I will always stand at the edge, just waiting to spring into action. But I am comfortable with that. Nate and I have, for the most part, learned to be heart parents. Our families have learned how to be heart families...I have lost some things on this journey...mainly friends. It is just not the same. I can't leave Xavier with a babysitter, I can't send him to day care. I really only feel comfortable leaving him with our parents...and they are all states away (PA , FL, RI). I am sure it is difficult to be my friend now. I am sure that some of my friends can't handle the thought that we could lose X. Why get close to him if something horrible like that could happen. I am at the age now when my friends are really starting to build their lives...getting married, buying houses, having their own children...I even think that maybe seeing me, reminds them that bad things could happen to them too...I use to rely on Nate to be my friend and he will always be my best friend, but he needs space and time for himself. He can not always be entertaining me....it would be easy to become depressed and lonely. BUT....I am not. In fact I feel very fulfilled. I have the honor of being a part of an amazing community of mothers. Mothers who know exactly how I feel. Mothers who can offer advice besides "Oh he is just being a baby". Mothers who laugh with me and cry with me. Some who I get to see, some who I talk to on the phone, some who I just know from the internet...but they support me, love me, pray for me, comfort me and give me the will to keep going. Who remind me to not sweat the small stuff. They snap me back into reality and help me realize what is important. They share their pain and struggles with me. They are my soft place to fall...and I just wanted you all to know...Nate, my mommy, my daddy, my in laws, my family, my friends and my heart community how much you all mean to me...thank you all for softening the fall!!