Cade’s Ostomy Journey-A mother’s Acceptance

This event was life changing for me, changed my direction, my approach to PEBD, and parenting a child with an ostomy. It started with something I read on a website, so I want to pass it on to all of you on this website. 

When we got the news that Cade was heading to PEBD, like every mom out there, I hit Google. I found a discussion board of people with ostomies (UOAA).  I browsed through so many questions and comments looking for something to cling to and show me the way. How were we going to do this? I wanted to absorb everything, or maybe just something.

I came across a mom who said that she planned to make the BEST situation for her young child with an ostomy. She would hide it so well, so no one in the neighborhood, the school or her teammates would ever know. She would keep that ostomy so locked down and hidden…her daughter would be JUST like the other kids! She had cool tricks to hide an ostomy, best products, etc….a perfect plan. This mom was speaking to me. I could relate to this plan.

Then, she went on to say that her daughter went to her very first sleep over in 6th grade– 6 whole years in the same school, and no one had ever known – not the kids, nor parents. Well of course, at that sleepover her bag leaked badly, leaving her daughter mortified and alone. Her friends were confused and parents scared for the next sleepover. No one knew, just like they wanted…. right?

Needless to say, she was passing this lesson forward. This mother strongly warned against doing what she did.   

This struck me hard. I was planning on doing the same when Cade hit school age. I thought that hiding it would be how he would have a regular life and be treated like everyone else. Cade is now 16, and this sounds silly looking back, but it changed us. From that moment on, you couldn’t find a person within 50 miles who didn’t know about Cade and his bag. We told everyone!  By the time Cade was 5 years old and he entered kindergarten, he was so comfortable with his ostomy that he was showing people (appropriately), and talking about it! He was explaining his disease to those around him. His bag  gave him confidence, power and stripped away any shame or stigma. It actually did the impossible, and the exact opposite of what I ever would think… it made him feel just like everyone else. Most kids eventually forgot he even had it. 

I have met lots of children with ostomies since and I have learned that for some more introverted kids, this may not be the best path– but for us, it was the BEST decision we ever made, and one worth exploring.