Sunday, June 16, 2013

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 her crib to watch her 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 your thankful, so thankful that she's still with you.

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.

It means measuring out her medication and panicking if she spits some of it out.  How much did she spit out? One cc? Two cc? Then wondering if you should guesstimate how much more she should have and if you'd over medicate her.

It means checking her nail beds against your own to determine how blue she is today.

It means asking your husband, your mother, 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.

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 he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.

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.

It means praying for a miracle to save your baby's life.

It means praying your marriage is strong enough to endure the hospitalization s, separations, and grief.

It means praying for the will to live, even if your baby doesn't.

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.

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.

It means we are all united by the same feelings.

It means that we all know the mixed up emotions of dealing with death- but more importantly of living with life.

It means that even though we are strangers, we are more to each other that friends could ever be.

1996, by Anna Jaworski