[SuzBerg]

I know there are several moms of kiddos with Heart Defects posting here so I wanted to start a thread for them. BUT anyone is welcome (and encouraged ) to post!

I came across this on Valentines Day which is also Congential Heart Defects Awarness Day.

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

What does it mean to be the parent of a child with a heart defect?
-It means going into your child’s room a dozen times a night just to check and see if she is breathing;
-It means standing over the bed 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 child’s face to try to hear the breathing (because your own heart's beating is drowning out any other sound in the room). You put your finger under the child’s nose to feel the warm air on your finger – until you wake the child and she 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 waking up with a start every morning, jumping out of bed running to your child’s room wondering why she isn't up yet;
-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 anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more she 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 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.


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 the heart.
-It means taking your child to the doctor and worrying that she will get something even worse from being in the waiting room .
-It means walking back and forth, and back and forth in the corridor until the nurse calls your child’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 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 child’s life.
-It means praying your marriage is strong enough to endure the hospitalizations, separations, and the grief.
-It means praying for the will to live even if your child 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 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 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 unparalled.
-It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.


What does it mean to be the parent of a child with a heart defect?
-It means we are all united by the same feeling.
-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.

[devildogwife]

I'd love to give the author credit, however all I'm coming across is unknown. Have you ever read this before Suz?

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".