Resisting The Alice In Wonderland Syndrome & Remembering What I'm Here For

With all that’s going on, I’m trying to remember this post, I wrote a few days ago, planned for today:

Mourning has it’s place, it comes around and around in a never ending cycle that’s built into the life a Special Parent. I am no stranger to the stickiness of mourning, pessimistic, self-defeating thoughts. I have been defeated before. Felt defeated…a writing of the past not on this blog…maybe I’ll post it later.

I almost got sucked in there. Almost allowed the arch of my back to bend to the pull, the suction of my being down the hole of defeat, towards the unending bleakness of hope lost. Already sliding, already succumbing. Finding no way out, no way towards any light…no light in the distance to reach for.

It’s not purposeful. It’s not helpful, directing, nor providing any positive energy to feed off of and propel you forward. Still. Still, I relented myself. Almost. Halfway down my own Alice in Wonderland, I tweeted. (I know, me on twitter, a big surprise). And I was asked for information.

That simple. Information. About LKS. About CSWS. About what afflicts my son and makes these holes agape and enticing for me. That request for information reminded me what I’m here for, what this blog’s for, what I’m charged with.

My son has chosen me to put together the pieces of his puzzle. His dad and I are his champions, researchers, questioners of those who would laxly dismiss him and what haunts his mind.

J has charged me to do this, determined, with extreme effort, with all the resources, strength and patience I can muster. It is NOT my job to crawl into some hole waiting for it all to go away…for it all to get better.

It IS my job to:

Discover ~ his haunting pieces
Embrace ~ him entirely
Educate ~ myself and those around us
Advocate ~ for him, being his voice and not taking ‘no’ or ‘I don’t know’ as an answer
Encourage ~ him to stand on his own feet utilizing his strengths, always reaching for more
Treasure ~ every moment, good and challenging, along with the gifts he gives me
Laugh ~ with him (and sometimes at nothing when no one’s around to witness it)

I hope to read this post again later, when the hole again presents itself. Because it will, maybe tomororw.

Because I will have to remember to crawl out.

(Photo By: Brandon Christopher Warren / Flickr)

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

2 Responses to Resisting The Alice In Wonderland Syndrome & Remembering What I'm Here For

  1. [...] This post was mentioned on Twitter by Gina, Gina. Gina said: Did you read Resisting The Alice In Wonderland Syndrome & Remembering What I’m Here For http://goo.gl/fb/WUU5H [...]

  2. Lynn says:

    I’ll have to remember to read this post again too when I’m falling down the rabbit hole. That job description can be daunting and exhausting on many days. Thanks for visiting my blog…and especially for this post.

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