My children look perfect to the naked eye. If you were to see them walking down the street, you’d never guess that I’m a special needs mom. But I am. You’d never guess that one of my kids has serious intestinal issues and struggles daily to stay healthy. But he does.
Dorian was born with an imperforate anus, which basically means his intestines weren’t attached to the outside of his body at all. His poop had nowhere to go. At one day of age, he had to have surgery to give him a colostomy. There’s really nothing in the world that can prepare you for the shock of having a child with an undetectable (before birth) birth defect.
Over the years, we’ve found a new normal. Dorian has had four surgeries in his nine years, which really isn’t that bad, but has been stressful each time. Lately, he’s been needing more and more enemas to keep his intestines functioning. It has been scary. We’ve gone from one enema every 4-6 months to one every week. I started researching alternatives. None were great, but we decided that we would do what was necessary.
Yesterday, we had a visit with Dorian’s surgeon. I was very nervous about this consult, since we were going to talk to him about a Malone procedure.It’s not ideal, but we thought it might be the only chance for Dorian to have a normal life.
You can’t imagine my relief when the surgeon checked Dorian out and told us that he was fine and didn’t need surgery at this point. We discussed the various options and he told us that at this point, a surgery, either to remove the piece of intestine that is not working or to do a Malone, would only lower Dorian’s quality of life. He also told us that he’s seeing a lot of kids right now dealing with constipation, because of the weather!
This is something we never considered, but the hot weather causes everyone to sweat more and that causes light dehydration. When kids don’t drink enough, it causes constipation and eventually, in kids like Dorian, blockages which require enemas.
Dorian was pretty relieved to hear this, too, as you can imagine. He also talked with the doctor about his sugar intake and was told that little boys need the occasional candy, but the first priority is liquids and fiber. I love this doctor.
We may not look like a special needs family, but we very much are. It’s easy to see someone walking down the street and think they’re perfectly normal, but we all have our stories and our pain. For us, it’s the stress of keeping Dorian healthy, with all his intestinal issues. It’s harder than it might seem. I don’t write much about this, but Dorian has given me permission to publish more information on his disabilities, in hopes it will help other kids and parents like us.