Having a child with VACTERL is a never ending series of ups and downs, artificial manic depression. From what I can tell, these things run in three month cycles. For three months things go great. We have life’s little annoyances, but life is generally good. Then out of nowhere, something completely new and unexpected happens and you spend the next three months working through the crisis.
But in spite of all the horrible stuff that happens, I have found one constant. After 2-3 years, the horrible stuff is really funny, at least in my sick and twisted brain.
But for people who do not deal with chronic illness, this often comes across as tragic or sick.
I have some old college friends visiting me this week. We were catching up on life after dinner. I was telling them some of what we had been dealing with. As I recalled what had happened over the last three years, I was laughing my head off. They on the other hand looked appalled and on the brink of tears. Personally, I thinkl it is funny when a Foley catheter comes out of your kid’s hinny before you get him on the toilet. Nothing in my opinion is funnier than poop flying everywhere. It is disgusting when it happens, but with a little time it is hilarious.
I guess your view of what is a funny changes when you deal with non-stop tragedy. Just for fodder, here are some other examples of “funny things.”
- When they told me my son had imperforated anus, it occurred to me that no one could call him an asshole.
- After his pull through surgery, they put a catheter in his “lil buddy.” His colon was connected to his urethra and after they were separated, his “lil buddy” needed to heal so it would not scar over, thus the catheter. He had his surgery a couple of weeks before Christmas. My family was out visiting for the holiday and on Christmas morning he was very fussy. We could not figure it out until about 2:30 when the catheter came out still partially inflated. YOUCH! Well it was not suppose to be out until January. We had to call his urologist on Christmas day. He wanted us to make sure he could still pass urine. So for about an hour, he laid buck naked on a blanket in front of the Christmas tree while my whole family watched for pee. Kind of a live manger scene.
- After surgery on his penis, he developed a hematoma. When I went to change his diaper, I saw that all of his genitalia were dark black. I figured it was gangrenous and would have to be removed. When we got to the OR, the urologist first words were, “Oh my gosh, you were not kidding.” Not what I would consider soothing. But then he said oh, it is just bruising…he will be fine.
- The image of me dilating his anus with a metal rod is forever etched on my brain. It will likely also be the theme of several of his therapy sessions 20 years from now.
- I have been pooped and peed on in just about every way possible.
I know there is more, but my empty brain cannot recall any more.
If you are crying or disgusted after reading this, you must have stumbled onto this blog by accident. If you are grinning or nodding, you obviously “get it.” Truly, shit happens.