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January 02, 2009


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Lisa Moon

Wow, hmm, lots to think about in your post once again!

I agree that as parents there is such a fine line to walk, most especially when your kids aren't so 'typical'.

And I struggle with the sense of normal and acceptance about my own disability - even using the word disability!

At first I was like "Oh, no, not me; I'll be fine when they fix whatever didn't get fixed before and then I'll be ok..." Yeah, or not.

But you know, after hobbling around for 2 years, with increasing pain, feeling like phantom people were randomly attacking me by stabbing my foot or leg with a giant KNIFE I knew I had to insist NO! this is NOT OK, NORMAL or acceptable! And I finally got a diagnosis, some explanation for this crazy symptoms...

Sometimes still it feels unreal, I wake up and think my pain has magically gone and the last almost-3 years was some horrible nightmare that went on far too long... but then, there it is, The Pain.

Where's the line for me with accepting this is what my condition is like versus do I 'fight' it and if so, HOW?

I'm still working on the answers but do let me know if you have some other wonderful suggestions in the meantime. :)

Carleen Ibrahim

I've been thinking about this post for a couple of days in an effort to determine where I "fit" in on the acceptance and adaptation scales. It has been an interesting introspection!

When my neurologist first told me that Chiari is a progressive disorder, my response was that I'd deal with the progression when it happened but that I needed to take care of the here and now first. Accepting that I had the problem was not an issue for me; it is what it is. By accepting and acknowledging that I have a permanent, long-term, progressive problem, I enabled myself to become proactive about treatment options.

While accepting the problem hasn't been difficult for me, I have to admit that adapting my life to suit it has provided me with countless challenges. How to avoid catching a cold that includes a cough that leads to paralyzing headaches is, perhaps, the greatest challenge of them all for me. I have found ways of dealing with wobbling when I walk, avoiding stairs, managing curbs, having seizures, seeing double, losing sleep, and coping with the various aches and pains, but I haven't found a way NOT to catch a cold!

As ludicrous as it sounds, my fear of the common cold has grown to such proportions that I isolate myself from anyone who appears to have symptoms of one. Along with the usual introductory material on the first day of classes, I inform my students of my Chiari and Epilepsy and ask them not to come to class if they have a cold. And although I explain to them why I don't want them sharing their germs with me, one or two will show up with stuffed or runny noses and a hacking cough. Why, then, are they surprised when I ask them to leave?

Hmmm....maybe acceptance for me has become activism in a sense? I have to protect myself from the things that I know will cause me harm, even if it's something as mundane as the common cold.

Ruth Palatnik

A very good post. And the worst of it, is as you are facing down any self-doubts you have, the parents who condone their children being in very passive situations, will tell you that not only are you crazy, but you are being mean to your kid

-a mean mommy.....

One Sick Mother

I don't know where the line is. That is a good question. I maybe after struggling to fix oneself, activism is the next step. Fight for a cure or more treatments for the disease. It's basically attacking the problem from a different angle.

Understandable reaction. Your students probably think you are overreacting, but most people don't get how much a cold can mess up someone with Chiari or syringomyelia.

Thanks for commenting. LOL My kids tell me I am a mean mommy all the time. Some other people probably think it but don't say it (I can be scary).

But you know: You have a kid with autism and behavior issues, and your skin gets real thick, real fast. At least mine did.


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