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 move and
you don’t hear the 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
warm air on your finger – until you wake the baby and
he stirs – and you’re thankful so thankful that he’s
still with you.

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 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.

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 3? And wondering if you should
guesstimate how much more he should have and worrying
about overmedicating.

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
wont be warm enough. It means worrying that even a
sniffle could cause an infection that would harm the
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.

I 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.

It means praying for a miracle to save your baby’s
life. It means praying that your marriage is strong
enough to endure the hospitalizations, separations,
and the grief.

It means your own heart knows a pain no parent should
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.

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 and understanding than you
ever imagined.