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When You're in 'What If Limbo Land' With Your Medically Complex Child

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It has been six years since I found myself sitting in this weird, wonky place again of awaiting a diagnosis for my child. I found myself sitting in the place I call the “what if limbo land.” How did we end up here? Again? I can’t begin to tell you how much I hate that place, oh yes I resent this place. If you are new here I am sure you will feel the same way, but don’t worry you will soon leave this place.

My name is Collette, and I am a returning mom. See … I have been here before, it’s almost déjà vu. I look around and I see the walls of worry, the fear and the stress yeah … that’s to the left, over there that is where the random moments of tears hang out. If you go down the steps that’s where the anxious and worry reside. I would love to show you around the “what if limbo land,” but I am struggling to find the door at the moment out of this place. I can’t be much help, but I am here to tell you I get it and we will find the door out of this place into the pretty room of acceptance. Oh, I love it there. It’s so calm.

Being a parent hearing that there is a possible issue with your child has to be down right one of the scariest things you can go through. I have been here before with my daughter who has cystic fibrosis (CF), and I am here to tell you walking through the door second time around isn’t any bit easier. The hardest part of getting a diagnosis is the “what if” time period. All the testing to figure it out, the waiting for MRI/CT/ultrasounds, because let’s be real there is always a waiting period to get in. The constant searching on googles on your spare time because maybe you can beat them ton punch of finding out. This is for the mom and dad whose world is going in circles. The rug is literality being pulled from underneath you, but you are still expected to continue with daily tasks that are expected for you. I wish I could tell you I was this superhuman mom who received this news and handled it with optimism and positivity, but that’s not the case.

Being in this place before I am telling you that as a parent you don’t need to be positive right now. Go find a room and cry if you need to. Go call a friend and just let it out. If you need to withdraw for a moment that’s OK as well. Go find a mountain and scream, scream as loud as you feel is deserving. Sure, you will be OK in the future and you will accept whatever diagnosis is about to be thrown at you. But not today, probably not tomorrow or next week for that matter and that’s fine. As a mom who has received a terminal illness diagnosis before, I feel you can trust me when I say it’s going to get easier. When acceptance hits and you start to understand medically what’s going on, it gets easier in this weird way. Just hold on. We will find the door to that room of acceptance soon, I promise. If you get there before me can you hold the door open for me or another parent in route?

Photo credit: fizkes/Getty Images

Originally published: April 24, 2021
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