What it means...

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 and see if he is breathing;

-It means standing over the crib and watching for the chest to rise and fall and when you don't see it move, you begin to panic and put your head down close to the baby's face to try to hear him breathe;

-It means that when you don't see the chest more and you don't hear the breathing (because your own heart's beating is drowing out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger... until you wake the baby and he stirs. You're thankful, so thankful that he's still with you.

What does it mean to be the parent of a child with a heart defect?

-It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't up crying yet;

-It means feeling a huge sense of relief when he hears you and opens his 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 his medication and panicking if he spits some of it out;

-How much did he spit out anyway? 1cc? 2 or 3cc's?

-And wondering if you should guesstimate how much more he should have and worrying about over medicating.

What does it mean to be the parent of a child with a heart defect?

-It means checking his nailbeds against your own to determine how blue he is today;

-It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

-It means snuggling him in an extra blanket for fear he 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 would harm his heart;

-It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room so...

-It means walking back and forth, and back and forth in the corridor until the nurse calls your baby's 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 an 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, the 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 ever know;

-It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands;

-It means feeling strong and determined and brave because you know you have to be.

What does it mean to be a parent of a child with a heart defect?

-It means you 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 and understanding than you ever imagined.

So what does all of this mean?

-It means we are all united by the same feelings;

-It means that we all know the mixed up emotions of living with Death - but more importantly of living with Life;

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

(Anna Jaworski)