When I first learned about Xavier's heart, I was introduced to some amazing moms and babies who were living with and beating HLHS. I clung to their stories like a person lost at sea, clinging to a piece of wood. Almost drowning them in my desire to just keep my head above water. I asked a ton of questions, called them crying and prayed that their story would be our story. I did all I could to stay away from the stories of those sweet babies that did not make it to the Glen. To tell the truth, for the first year of Xavier's life, I had myself convinced that all we needed to worry about was making it to the Glen (stage 2 of Xavier's repairs). Once we were past that "critical" stage, we would be okay.
But in past few months, reality has smacked me hard. We are losing babies and children well past their stage 2. They are doing well and amazing us one day...and gone the next. Some are getting their special gifts of a new hearts...living years with that gift, only to be gone...with little or no warning.
People always say to me "your so strong" or "I don't know how you do it". But they don't see me when I am alone with my thoughts. They don't know the debilitating fear I feel on a daily basis. I know that you can't have faith and live in fear...but to be honest, in this life of a heart mom..it is just impossible to live without fear. I don't want to lose my baby. I don't want to see him sick or in pain. Horrible and terrifying thoughts of what life might be without him hit me at the strangest times. I get physically sick when I think that right now, what I consider my worst nightmare, is someone else's reality. I go to bed every night begging God to just take me first...I can't live in a world without Xavier.
I have learned to cope..learned to live life, enjoy myself, be happy. But I always carry that terrified woman with me. For so long I was ashamed that I was so afraid...but a heart mom who has walked this road ahead of me and for much longer told me to "live with my fear and stop running from it...you can't fight it unless your looking it right in the face"