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Louis Ribbens - Journal

Read Entries & Updates

 

Posted 2017-11-16T15:44:00Z

Just a note in the middle of it all

  There is this site called, TheMighty , written and edited by families dealing with terminal illnesses. There's a lot of  insight on CHD and perspectives from patients and parents. I wanted to add this passage on Louis' page with the intent that one day he will read it and have a tiny window into what his mama has felt through his journey.  I'm always worried about how he will feel when he's older. He will face more surgeries and I don't want him to feel embarrassed by his scars, or upset at me for feeling so much. [...]

Posted 2017-10-19T01:56:00Z

This one is about Louis' mama.

We spent a magical and busy summer taking trips as a family of three, visiting places we had never been, and sharing lots of rather normal, boring, joyful, loving time at home. I keep telling myself I will update here and I continue to put it off to the next milestone, check-up, well visit, family event, etc etc. I blame it on being busy, but the truth is I am struggling.[...]

Posted 2017-04-27T03:13:51Z

April 13, 2017

I wanted to wait until Louis had his follow-up with his cardiology team before I updated his page in detail. What a long three month wait it has been! At first, I kept thinking, "Gosh, I can't wait three months. I need to know how his heart is healing RIGHT AWAY." But the more time we spent outside of the hospital, doing family things in our own home, I began to dread the cardiology visit. It felt like we had hit the reset button and now things were going how they were "supposed" to be going...normal, even. I was afraid of all the unknown, the complications you can't predict when it comes to Congenital Heart Disease.[...]