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ITS HARD

I am in Boston this week on business. 
Today was my first full day of meetings and as to be expected I barely have had a second to myself let alone to get onto facebook to read through the days statuses.

When I did. My heart shattered. 
Last night a fellow heart mom took her little boy to the ER. For a cough. 
Yes you read that correctly a cough. 
Things took an unexpected turn and this morning, he is gone. 
Just like that. 

The problem with CHD is it takes our children like a thief in the night. With no remorse and no going back. 

Hypoplastic Left Heart Syndrome (HLHS) comes with no cure. 
THERE isn't a cure!
Surgery repairs the heart BUT the heart will never be whole. 

To quote a fellow heart mom:
"Our children fight tirelessly day and in and day out.  And when we think we have reached that point where we can take a breath, the thief comes in an robs us of the tiny people that  are our  whole world"

Finley was younger than Mason and post-Fontan.
POST-FONTAN is like the icing on the dirt cake.
It is when our children's chances of survival dramatically increase.
After Mason had his Fontan surgery. It was the first time in years that I was able to actually take a deep breath and feel like - We made it.

Tonight its hard.
Tonight I pray for his family.
Tonight I pray extra for my son.
Tonight I pray for the heartland.




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