Jared and I are being hit hard with a heavy realization: Marleigh's condition is going to affect the rest of her life. Furthermore, most people don't even know of Chairi, let alone understand it... including an upsetting amount of the "medical" world.
The heat of the summer brought to light new symptoms she deals with; symptoms her own neurosurgeon's office deemed "not Chiari-related" over the phone. Why? Because they're not "textbook" and while a phenomenal surgeon, he's not a Chiari expert. No neurosurgeon in Texas is. Sadly, very few around the world are considered specialists that actively and passionately research Chairi. Meanwhile, I'm finding countless other Chiarians that experience these same symptoms. It feels like the medical world is in the dark ages regarding Chiari and it's related conditions.
I am reading countless stories online of people going into the ER due to the severity of their pain and the medical staff doesn't even know what Chairi is. So many others that are made to feel like drama queens and hypochondriacs because of their "endless" symptoms. Humans losing hope because people don't understand them and don't make an effort to sympathize with them.
This isn't okay. Not for them. Sure as hell not for my own children. Its not okay for anyone.
As we prepare to send Marleigh to school for the first time in her life, we're writing up a 504 Plan. She will have to be treated differently than the other children for her own safety. For the rest of her life. That scares me. There will be countless children and adults alike that don't understand anything she's going through. Many that won't understand why she's fatigued, or sensitive, or can't do the things a "normal" child can do... because she looks normal, right? And that's the thing, people are judged for the way they look. We place assumptions on everyone we meet- spiritual assumptions, medical, emotional, financial, physical. That hinders us from relating to them, from understanding them, from sympathizing with them. Wouldn't it be beautiful if we taught ourselves to get to know each other with an open mind and an open heart? To embrace differences rather than fear them?
Chiari makes Marleigh different. If you've read this far, I'm sure you care about her on some level. I urge you to read about Chiari. Learn what it is and what it means for her. The more awareness that is spread, the more understanding there is in the world for Chiarians. More understanding means more hope.
There's a blog post brewing in me about all of this... if I ever actually take the time to write it ;)
Below are some links to helpful information regarding Chiari Malformation and it's related conditions:
www.conquerchiari.org
www.csfinfo.org
www.asap.org
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