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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Tuesday, July 16, 2013

Tomorrow is a big day. A big, scary day.

Tomorrow Lauren has an appointment with cardiology and it will be her first time getting echo'd since she was discharged from the hospital after heart surgery.

I alternate between total calm and absolute terror. What if she needs more surgery? Just the thought of it makes me feel like I'm starting to slip back into the dark hole that consumed me when she was so sick. It's like there was an overwhelming darkness taking over and completely suffocating me and I couldn't stop it and I couldn't get myself out. It's absolutely terrifying. I still can't breathe when I think about it. It took me a long time to feel like myself, even after she got better. Some days I still feel like I lost a part of myself I can never get back. I'm so afraid of slipping back into that and not making it out the other side with my soul intact. When Lauren left the hospital I calmly walked her to the car and we left. But inside I felt like a 90 year old woman with an ache in my bones and the weight of the world dragging my soul to the earth. I was drowning.

But then I actually LOOK at Lauren. She appears so healthy. She is doing so many new things! She's pink, she plays all the time, she loves to eat, she is so interactive. She's happy and she's by all accounts healthy. All things that are the exact opposite of how she was pre-surgery. She couldn't eat, she couldn't breathe, she was lethargic, she was gray. Aside from several bumps in the road, surgery fixed all of that. The only reminder left is the thin silver scar that marks her chest and reminds us of how damn lucky we are.

 When she was imaged after surgery they said she had a residual VSD and some tricuspid valve regurgitation. In human language that means she still had a hole in her heart and a leaky valve. I am hoping beyond all hope that her heart has mended itself. Or as I like to think, the Great Physician has had his hand in this and mended her Himself.

As I've said before, Lauren never really felt like mine until after surgery and had the chance to  fall in love all over again. I felt like she was a borrowed baby because I was too afraid to hope she'd make it. Those old feelings are coming back to me and making me so sad to remember. I love her more than life itself and I would just die without her.

Please pray for all of us tomorrow as we see her cardio team. We really need it!


  1. Prayers headed your way but like you said when it comes to the heart how she is looking and acting tells you a lot so I don't believe you need to be worried. Cate had the same post op issues - 7 years later the VSD closed up but she still has a little leak around the valve. No surgery required there, we just give her a little blood pressure med to keep the stress off and she is a completely active and healthy little girl. It is so hard to get over those feelings you remember but hopefully it will be a routine simple checkup from now on - hang in there!