After three years of chemotherapy drugs to treat my son, Jack’s, heart disease we are terrified and over-joyed to announce that he is now off of chemo as of today.  Will he stay off?  Time will tell.  Next month we will do many tests at the hospital to see if he has, in fact, kicked this heart disease in the butt and is chemo free forever.  

In my little world of being a heart mom, I pray hard for babies who are dying in the hospital ever single day.  I pray for them because I used to be the mom in the hospital hovering helplessly over her failing child.  And in my little heart mom world, I find that most of those babies that I pray for lose the fight.  Especially those with Pulmonary Vein Stenosis.

I am going to stand on the rooftops and shout out loud and clear right now that

I

HATE

PVS!

I hate this disease with every fiber of my being and I loath the way it takes little ones before they have had a chance to experience any of this life on earth.  I hate it for every mom and dad who had to kiss their little ones good bye for the very last time. I hate it for every empty crib and lonely headstone.  I hate this disease so much for the years of agony my husband and I have spent fighting it.  I hate it so much that my eyes sting with hot, angry tears when I think of it.

But do you know what I definitely do not hate?  I do not hate that, because of this disease, I have learned the value of every breath sucked into my little one’s lungs.  I do not hate that I have met the bravest and most dedicated moms, dads, and little ones.  I do not hate the opportunity I have had to see the valley of the shadow of death and learn to fear NO EVIL.  I do not hate that through Christ, not even the grave can defeat us.  Jack is our miracle.  Jack is our fighter.  God is our champion.  And the community of believers who have championed together with us through the past three years have been the hands and feat of Christ.

A while ago, I did a little series of photos where we stood little Jack on things and took photos of him.

They were cute and fun and got a surprisingly big reaction but I got busy and really couldn’t keep it up.

 I decided that today was the day to take one last pic of Jack being on top of things.

Oh you know, just standing on the truck.

Oh you know, just standing on the truck.

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Oh you know, just standing on the table.

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Oh you know, just standing on the toy box.

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Oh you know, just standing on the rocks.

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Oh you know, just standing on the record player.

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Oh you know, just standing on the father.

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Oh you know, just standing on a sheep.

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Oh you know, just standing with the dinosaurs.

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Oh you know, just standing on the dresser.

Oh you know, just standing on King Arthur's stone.

Oh you know, just standing on King Arthur’s stone.

Oh you know, just CHEMO FREE!

Oh you know, just CHEMO FREE!

Pray that we are chemo free for good!  God’s will be done, of course.  Love you all and I pray for you in my own little way.

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