My Blog from Nov 30, 2006 from my space


What does it mean to be a parent.....
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 he'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 him breathe.
It means that when you don't see the chest move and you don't hear him 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 he's still with you.
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? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.
It means checking his nail beds against your own to determine how blue he is today.
It means asking your husband, your mother, or 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.
It means worrying that even a sniffle could cause an infection that could harm his 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 hospitalizations, 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 than friends could ever be.
1996, by Anna Jaworski


The Chosen Mothers
THE CHOSEN MOTHERS By Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard." Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy." "But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

After reading this I wonder if I am truly a good chosen mother. Although God does no wrong. I know there are family's out there who are going through way worse than me and I cannot even begin to imagine. All I know is what I have been through has been soooo very very hard.