Facebook Post from August 13, 2014

One year ago today we sent our first baby off to have brain surgery. It was, by far, the most terrifying and difficult experience of my life. Being the amazing little fireball that she is though, she quickly turned our fear and worry into joyous gratitude as we watched her recover with flying colors.

We've posted the smiling photos. The happy, hopeful moments. I clung to those moments because they kept me strong. Now a year later I can share the tough photos. Marleigh is so proud of her story and her scar; she eagerly shows off the incision mark on the back of her head to anyone that wants to see it and happily explains to new friends on the playground that she's had brain surgery and has to play gently. Watching her go through the tough moments and barely blink an eye, to go through stress and pain and the unknown and not let it phase her... that's how I learned to allow these "tough" times to strengthen me rather than tear me down. 

She's truly an incredible little woman. 

  

 Ninny, PawPaw, and mommy with Marleigh in PICU following surgery.

Marleigh in the Pediatric Intensive Care Unit following surgery.

Many people assume that her surgery "fixed" her and was the end of her Chiari journey. Sadly, there is no cure for Chiari and the surgery is only to improve symptoms. Her journey is just beginning, as she will live with Chiari for the rest of her life. But seeing her grace and strength over the last year gives me absolute peace that she will handle it all beautifully.

Marleigh's incision 24 hours after surgery. 

"And though she be but little, she is FIERCE."

- Shakespeare

Facebook Post from July 25, 2014

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