Friday, September 22, 2006

The ties that bind.

Originally uploaded by jesslee23.
Sounds kinky, yes? Unfortunately, it's not. I have been doing a lot of thinking about parenting lately. And I am tired. I am tired of feeling the need to apologize for my children. Child, mostly. I am tired of the looks. The whispers. The disapproving body language that SCREAMS "if you would just control your child..."

Here's the deal. Little boy has celiac disease. Celiac is an affliction that leaves the body unable to process gluten. Gluten is a protein that is found in grains like wheat, rye, oat and barley. People with celiac disease suffer from all sorts of maladies. Such as stomach cramps, failure to thrive, no immune system, intestinal distress, hyperactivity, manic behavior, etc etc etc. This list isn't even complete. This is just what we deal with with little boy on a daily basis. If he were to continue to ingest gluten on a regular basis we would deal with the possibility of him contracting bone disease, such as rickets, intestinal cancer and even schizophrenia. Celiac sucks. It is something that is doable. But it sucks.

We started thinking that little boy had "issues" when he was just a baby. He started getting sick. Put in the hospital, calling child protective services because mom obviously is making this baby sick, completely stop growing sick. It's sad when your child's file rivals yours in size. And you're the one that went through IF. He has been in and out of the hospital since he was 6 months old. They could not figure out what was wrong with him. They told us that they thought it was leukemia. Imagine our relief when we were told it was "just" a diet issue. But that does not give it enough weight.

He has been gluten free for 2 1/2 years. And he's doing well. He's growing. He's not sick ALL the time anymore. But life is not perfect and neither are people. He continues to have reactions because he continues to ingest gluten. His reactions have changed over the years. He has gone from throwing up immediately to being completely manic. Unable to sit still. Unable to focus his eyes on you. His eyes jump around more than a crack head talking to the po-po. He still has a distended belly and looks malnourished. He jumps. He is unable to process right from wrong. He cannot hear you tell him no. But he is sweet. He loves and feels SO much. He wants to please. I just wish people could see that.

I hate having the child that is labeled. You know...he's THAT kind of kid. The one that if I ask you to babysit, you have to think about it. The one that is challenging and high maintenance. And I hate hate hate hate hate that people assume that he's a bad kid or we are bad parents. I feel like I am forever trying to explain to people that he's reacting. That's not who he really is. He's only four years old. He doesn't have the verbal capability to sit and rationalize with you why he is pissed off and doesn't feel well, he just knows that he is. He tells you in the only way he knows how.

Woulda Coulda Shoulda has it exactly right. I am tired of apologizing for little boy. I want people to see his spirit. See what I see when I look at him. I want people to, if not love him, to accept him. Yes, he is flawed. Yes, he has issues. So do I. So do you. Get over it.

And when they don't...when they cluck their tongues and roll their eyes, I want to take a lesson from little boy. I want to run and yell. Because if I run fast enough and if I yell loud enough, their opinion will cease to matter.


DD said...

Obviously you are an amazing Mom. You persisted in getting a diagnosis that answered all the questions. You are managing his illness and eventually he will be able to help you, and that's because of you.

I'm sorry people make snap judgements. When something like this happens, it makes you look at things differently and I'm so glad you shared this with us, because I will look at things differently as well.

casey said...

When I used to see other parents reacting to their kids because of what "outsiders" might think, or because of family pressure, I would scoff. "Not me. I'll never do that." But now that I have a daughter, I constantly am weighing what she needs versus what everyone around me expects me to do. I realize how easy it is to fall into that trap.

So, I am going to encourage you to stop apologizing. Nobody deserves an explanation from you, nor does anyone have the right to make you feel bad about a situation that you are handling the best you can. Focus on your little guy and let the world go take a flying "back flip!"

davido said...

A friend of my son has celiac. What strikes me is that we NEVER heard of this back "in my day".

I'm reminded of the movie "Lorenzo's Oil". Truly, the medical establishment is largely clueless on a lot of things. You really have to take charge of your son's healthcare. It's not that docs don't want to help, but they deal with 100's of conditions. You need to focus only on 1. This is where the net is really powerful. I'm sure there are celiac support groups online. My feeling is that 1000 like-minded and focused parents can find real cures and/or ways of alleviating symptoms. Good luck!