Tuesday, May 23, 2017

The Freedom of Expression Comes At a Price

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There are days I certainly ache with an endless craving for comfort and understanding.  The real risk and consequence of being candid and raw about the special needs journey is that you are frequently met with criticism, judgment, and harsh comments aimed to further wound an already broken heart.  I'll likely never truly understand what motivates many to intentionally aim to hurt someone.  Maybe it's an indisposed thrill of some sort to spend energy on attempting to emotionally injure another human being - I'll never truly know no matter how much thought I give to it.  People love to take jabs at you however, especially when they sense any kind of difficultly in your life's story and journey.  It's like the world has lost touch with what it means to be sympathetic, empathetic and human.  Words can be blatantly cruel and comments can be deceptive in artificial compassion and support.  When I'm authentic in my feelings and experiences as a special needs parent what I'm often throwing out into the universe is really a reflection of a desire for connection.  It's natural to crave benevolent affection - especially when we walk in a hardened existence among insurance denials, financial trials, providers that see your child as simply another cerebral palsy head count, or a child you've simply heard of but never really took the time to know, love and adore, and when we are lacking any real consistent, genuine friendships and meaningful relationships.   Ever wish the world would wrap you up in a hug provide unwavering comfort, love compassion and understanding?  I do.  I wish it a lot. 
But what I'm often met with is back handed advice, a suck it up buttercup response, you're drowning us all in your negativity, or that I'm simply selfish because somewhere out there someone must have it harder than I do.  It becomes a contest of my pain trumps your pain.  We fail to realize that we're all on the same playing field and that pain is pain.  Whether you lost your dog who was your best friend, whether you just lost your home or a job, or are facing a divorce or a dissolution of a treasured relationship, or are coping with the challenges of special needs parenting.  Pain is pain.  It just is. 

Why should there be such consequences in being straightforward about our lives? Within a twenty-four hour period after posting about one of Noah's final appellate losses on social media, despite my every effort to take it to the very end of what I could do I was greeted with three messages aimed at inflicting further emotional distress.  One of the commenters expressed that I had a "pour man's mentality."  And that if I simply worked harder, or "got off my ass and quit mooching off the government" I could afford all of Noah's needs without needing Medicaid's assistance. 

A second commenter found that I had was being selfish for expressing difficulties when countless people lost their lives hours prior to my post in a bombing in Manchester, England and that I had no room to complain about anything. 

A third commentor expressed that I'm continually negative and that I'm drowning everyone in negativity all the time.  And that it's my fault that things are not going well for Noah and that I'm quite the terrible parent because if I vocalize any hardship in the special needs journey that I'm placing blame on Noah for it and how terrible that is.  For the record I've never placed blame on Noah for anything - but people read into whatever they choose, whether it be real or factual and make gross assumptions based on things that simply don't exist.

That's really the price you pay for putting your feelings out in the great wide open.  You set yourself up to be unwillingly attacked and blindsided by people whom you've never met, and who have no real clue about your life in any real way.   I don't know how to censor myself into other people's idea of what they find acceptable to share.  I don't know how to sit quietly in the stew of special needs pain, I don't know how not to share the incredible triumphs that can exist in our day if our child does something so remotely awesome and something they were completely physically unable to do the day before.  Discussing the reality of everything from the highest of the highs to the lowest of the lows makes me real.  It makes Noah's story real.  And if you're reading this then you in some way need to hear it or you wouldn't be reading it.  Whether I'm offering your courage to get through a hard day, or you come to learn more about a little boy who defied the odds and was granted a miracle and chance at life, or whether you need to use me as a verbal punching bag to make yourself feel better - you come regardless because you need something from what I write and share.  I'm not looking for endless popularity in sharing Noah's story or my own personal feelings about being a special needs mother. 

But kindness, support and love is forever and always welcomed, noticed and appreciated.  Strive to build others up not knock them down.  Please remember the The Three Gates of Speech:
At the first gate, ask yourself “Is is true?” At the second gate ask, “Is it necessary?”
At the third gate ask, “Is it kind?”

And if you're fancying sending me a note that's really lovely, but let's shoot for it to be kind and supportive - because every special needs mom can use more of that. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.