Skip to main content

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.




Comments

Popular posts from this blog

Loaded Diaper?!?!?

Today's post title comes to you from the one and only Greg Garka... Thanks for the idea babe! As far as Mason is concernced today was another good day for our little man! We made our goal and got up and went on a total of three walks. The last walk of the night he spotted the “playroom” and was interested so we stopped and visited with our neighbors while he played. It was the highlight of the day. His appetite decreased today but that is to be expected since he hadn’t yet had a bowel movement (in 6 days)– however about 60 minutes ago things changed in that department and I am happy to report his bowels are working and back in action… During his echo he was again a crowd pleaser and was on his best behavior. The technician said that he was the best 3 year old she has done. It is so funny; he gets upset when something is about to happen and he doesn’t understand what. He tells us he is scared and then after we explain to him what they are going to do and that it won’t hurt –

Our Day at Children's

Hello all, Kelsey and I spent the morning at Children's Hopsital in Seattle today, what a place! They sure do a good job of trying to make the kids feel comfortable...part of me didn't even feel like I was at a hospital. We met with a Cardiologist, Dr. Vernon, and a Paranaetologist, Dr. Holmgren (yes, Mike Holmgren's daughter). Both of them were very nice and extremely informational. Dr. Vernon did confirm that Mason has HLHS and is a candidate for the Fontan Operations, which are the three stage surgeries he will have to go through to get his heart working as normal as possible. Kelsey and I have been talking about where we would want to do the surgeries in case we weren't comfortable with Seattle Children's. We knew going in that Children's in Seattle is one of the premeir hospitals in the country, but weren't sure how they were compared to other hospital's like University of Michigan with this particular heart disease. I'm glad to say that w

Wordy Wednesday or Wordless Wednesday????

The big question of the day should I be wordy or wordless on Wednesday? If I go WORDY a post might have quotes such as: - When you are through changing you are through - It takes both rain and shuneshine to make a rainbow - If a care is too small to be turned into a prayeer, it is too small to be made into a burden - We make our plans, but the Lord determines out steps. Proverbs 16:19 - The world at its worst needs a church at its best - The essence of generosity is self-sacrifice - Philanthrophy, like chartity must begin at home - A reject opportunity to give is a lost opportunity to recieve If I go WORDLESS I could share my life through photos... Message me, facebook me, call me, leave a comment or talk to me in person either way let me know your thoughts...