Share. Connect. Love.
Just in case you aren’t receiving my newsletters, I wanted to share that my memoir is complete and available for pre-order. Click the link and order your copy this week! https://nicoleribbens.com/born-blue[...]
With the arrival of spring, and April on the horizon, I am taking a giant leap (with expert help) to publish a memoir- my experience as Louis’ mama. It is a more in depth version of what I have shared on Louis’ care page. I have learned so much these last 3 years; about congenital heart disease and living in the balance of hope and fear and tender mercy. Most of all, I have learned a lot about myself. It feels right to put that out in the world. [...]
Louis is pretty consistently telling me to stop reading what everyone else is writing because the journey is not linear and he is making his own way. [...]
We started the day late for everything. This has always been my truth. I am not a timely person. But I like to think that if I'm early everywhere that means there's a lot of time in my life that I'm not using to its full potential. So please know that if I'm late, that means I filled my day with important people and tasks...but also sometimes, I just don't have it together. Today, we just didn't have it together. Between an extended conference call (Dan) and an opinionated toddler (Louis) we needed to shuffle our schedule so we weren't late for everything. We decided we would head to the hospital early and find coffee and a toy surprise and start our full day of appointments on the right foot.[...]
we would love to share that instead of hosting a birthday or buying Louis gifts for his upcoming birthday, we would like to do something special. We are running a t-shirt fundraiser whose proceeds will go to the Helen DeVos Children's Hospital's cardiovascular ICU! The CVICU opened earlier this year and they specialize in the care and wellness of kids like Louis, recovering before and after heart surgery and complications. We thought it would be great to encourage our friends and family to purchase these shirts, share with your friends, and show Louis how many people are always rooting for him, all while supporting kids like him through a donation to the pediatric CVICU.[...]
I can't sleep.
So I'm researching public records of the congenital heart surgery database (I know, I know). This feels like it gives me a tiny semblance of control over a situation that is absolutely and completely out of my jurisdiction.
My fears have been tangible this week. I can feel them resting heavily in the back of my throat and, every time I eat, squeezing my middle like a lead vest. Uncomfortable and all too familiar- it makes me want to barf.[...]
My baby, in all of his hard and fought-for glory.
Louis was a perfect patient through his echo, laying so still without a single peep the entire time. I started to think maybe something was wrong, he's tired, his heart is slowing, or his function has decreased further. (These are the worries of a mama who has seen a lot of sickness in her baby) Likely he was an angel because the room is kept warm and dark and they had Cars playing when we walked in, a movie he hasn't seen before but he immediately recognized Lightning McQueen! [...]
What's coming will come and we'll meet it when it does. -Hagrid, Harry Potter
November 10th marks two years since Louis' last open heart surgery and one full year of marriage. Part of our wedding preparation was a slew of marriage counseling courses with our priest. We had to fill out a compatibility exam and answer several series's of questions about finance and career and family planning.[...]
