I am a mother who has just found out that her precious new little baby boy has a serious heart defect and the possibility that I might lose him is hitting me hard. I am afraid to not make the most of whatever days I may have with him. I am afraid to get attached to him because his death will leave me devastated. I am afraid, afraid, afraid! I can’t breathe. I look at this tiny baby and he looks so perfect on the outside. How can he not possibly be perfect on the inside? How did this happen? How will I get through it?

His name means beloved gift from God and I have loved him from the moment I saw him. He is beautiful. He is going to have surgery at 4 months. old. As I cradle him at night, I wonder if I will ever see him roll over, or sit up, or walk, or run. Will I ever hear him say ma-ma and da-da? Please, Dear God, don’t take my little boy away from me. I know he’s Yours, but I want to raise him and enjoy many years with him. My heart breaks over and over and over again.

He is four months old and had surgery to correct his Tetralogy of Fallot yesterday. He is not doing well. His blood pressure drops drastically, he is dying. We have been rushed out of PICU while he is in crisis. One mother wants to know whose baby is keeping her from getting in to PICU to see her own. She goes on and on with insensitive questions while my son is dying. I tell my husband that if she doesn’t shut up I am going to hit her. Thankfully she closes her mouth and I pray and I pray and I pray. My own heart has stopped beating. Here comes the nurse. He is out of crisis. Here comes the doctor. He wants to reoperate. How will my little baby boy survive another open heart when he is already just barely hanging on? My husband is signing the permission form. I kiss my little boy on the forehead and beg him please don’t die, please hang on, don’t give up, I love you... They take him away and I am falling apart.

I am in the chapel. I have surrendered my son’s life totally to God and have vowed that I will love and honor and serve my God no matter what happens. I have a perception of what an awesome privilege it will be for my son to serve God in person, face to face waiting on the Master. Peace is flooding me from head to foot....it’s indescribable.

God is giving my son back to me. He is improving, ever so slowly. He is now in his 36th day at the hospital and going home with an NG feeding tube and a Broviac IV line for home IV therapy for the bacterial endocarditis he has contracted. I am rejoicing, I am so excited. He’s going home!!!!!

My little boy just passed his 5th surgery anniversary. It’s a second birthday for him. It’s been 5 years since God has given him back. Every time he runs, jumps, stops up the toilet, hammers nails into the bathroom wall, drives me crazy, makes me laugh, tells me he loves me, gives me a kiss, wraps his arms around me neck, I am reminded of how very blessed I have been. Through it all I have seen strengths in my husband and myself that we never knew existed. I have experienced, in totality, God’s strength and faithfulness. You see, my son was appropriately named at the first birth. He is truly a beloved gift from God and has been lovingly given to me a second time. Every time he runs a fever, or gets a cut, I hold my breath against endocarditis. Every time we go for a yearly cardiology checkup I face the reality that his heart may be enlarging, one of the valves may be leaking more, it may be time for a valve replacement. And every day I know the joy and privilege of being his mom and how precious are all of our children.

jonesr@schoollink.net