Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2-year-old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt, but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them off.
There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me, “Why in the world would you let someone do that to him?”
I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said, “His colon didn’t finish forming so he needed them.” I left out that he had a rare disease called Hirschsprung’s disease because I was a little annoyed from her first statement. She then goes, “Well I am sorry, but I just think that is so repulsing, can you please keep his shirt down?” At this point I just wanted to shake this woman and scream, “What is wrong with you?” But instead, I told her to have a good night and went to another line.
So now I’m sharing this picture—because there is nothing repulsing about my son. Stomas and ostomies seem to be a taboo, when in reality, more than 500,000 Americans have one. My son’s disease may be rare, but his stomas are not.
So here’s a little education for anyone who doesn’t know about stomas and ostomies. A stoma is a surgically created opening that allows the body to expel waste. Both of my son’s are from his colon, but stomas can be from your ileum (small intestine) or bladder. Was this the first choice of a life I would have chosen for my son? Absolutely not. But this was his only shot at life. When he was two weeks old, his colon ruptured. It left him with a life threatening infection that nearly killed him. His stoma saved his life. There is a very good chance he will have these for the rest of his life, and if he does, it will be my job to teach him a positive body image. It will be my job to teach him to love himself and his bags.
Had he been a couple years older and been able to understand the ignorance the lady was spewing in line behind us, how much of a negative impact do you think that would have had on him?
What that woman doesn’t understand is, when my son is healthy, he is no different than any other 2-year-old. He runs, plays, swims and goes to daycare. When he’s healthy, you wouldn’t be able to look at him and know he’s had more than 20 surgeries and procedures. You wouldn’t know he’s got more ahead in his future. You wouldn’t know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn’t know that twice a day a catheter is put into his stoma to “feed” it stool in the hopes of growing his colon.
My son is my heart. He is so funny and full of personality. He is sweet and loving and kind but also a little ball of fire.
Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his.
Follow this journey on My Hirschsprung’s Hero.