When People Respond to My Child’s Diagnosis With ‘Everything Happens for a Reason’

I’ve been asked many times what condition my son has. When I tell them, they look at me with a confused on their face.

Prune belly syndrome is a rare syndrome, and most people have never heard of it. Honestly, I had never heard of it either – until my child was diagnosed.

I start on how his bladder doesn’t work right, which leads to more questions and me telling them how his belly button has a hole in it that we catheterize him through. By the looks I’m getting, I start to wonder if I have something on my face. I fumble over words like ureter, hydronephrosis and creatinine. I need to remind myself to speak in layman’s terms because to them, I’m speaking a foreign language. I eventually just settle on the fact that he has kidney disease.

Then, they say it.

“Everything happens for a reason.”

What do you do at that point? What do you say?

My son’s condition has not been proven to be genetic. It is not environmental, and it isn’t due to something I did during my pregnancy.

It just happened. No explanation available, no reason.

I used to lie awake at night pondering that statement. I would think, what is the reason for this happening? Why us? Why this diagnosis?

It’s a normal phase to go through when your child is diagnosed with something you’ve never heard of. You want answers, and you want them now.

It’s been five years, and I’ve finally come to terms with the fact that there isn’t always a reason for everything.

I understand that a lot of the time, people just don’t know what to say or how to act, and sometimes they can say the wrong things. I get it, I’ve been there. We all have.

If I can offer any insight to help others avoid this phrase, it would be to say, “So what does this all mean?”

But sometimes you don’t need to say anything. Just listen, and if you have the time to listen, I have the time to talk.

Follow this journey on Medicine & Smiles.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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