What It Means To Be The Parent Of A Child With A Heart Defect by Anna Jaworski

© 1996 Anna Jaworski

What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check to see if she's still breathing. It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear her breathe. It means that when you don't see the chest move and you don't hear her breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger - until you wake the baby and it stirs and you're thankful, so thankful that she's still with you.

What does it mean to be the parent of a child with a heart defect?
It means feeling a huge sense of relief when she hears you and opens her eyes and smiles. It means saying a prayer of thanks for another day.

What does it mean to be the parent of a child with a heart defect?
It means measuring out her medication and panicking if she spits some of it out. How much did she spit out? One cc? Two or three? Then wondering if you should guesstimate how much more she should have and if you'd overmedicate her.

What does it mean to be the parent of a child with a heart defect?
It means checking her nail beds against your own to determine how blue she is today. It means asking your husband, your mother, or your sister, 'Do her lips look blue to you?' It means snuggling her in an extra blanket for fear she won't be warm enough.

What does it mean to be the parent of a child with a heart defect?
It means worrying that even a sniffle could cause an infection that could harm her heart. It means taking your baby to the doctor and worrying that she will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.

What does it mean to be the parent of a child with a heart defect?
It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

What does it mean to be the parent of a child with a heart defect?
It means praying for a miracle to save your baby's life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn't.

What does it mean to be the parent of a child with a heart defect?
It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.

What does it mean to be the parent of a child with a heart defect?
It means your love knows new unlimited boundaries. It means your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.