Friday, October 7, 2016

Resilience

"All this stuff...other people's opinions.  It's nothing, you know what's not nothing?  When a Dr tells you there is something wrong with your kid.  All the things he is never gonna do, and it's a nice long list....so now when something happens, it's like "what else you got?  Bring it on.  I get it.  Normal seems good, but guess what?  We're not normal.  We're better, we're...bulletproof."  -Jimmy DiMeo (Speechless TV Show)


I feel like once you enter into the unknown and you begin your special needs journey it feels like one constant uphill battle.  There might be small spots to sit and catch your breath, but as a special needs parent there really is nothing that comes easy.  It wasn't until last week at the weekly parent support group I attend that it became clear that if you asked me one word to describe a special needs family it would be "resilient".

The new television show "speechless" to me is a blend of Parenthood meeting Modern Family with a special needs child component.  The writers are witty,  full of heart and from what I have read, one of them is a father who has a child with "Pitt-Hopkins".  Another rare disease that has no known cure, with similar symptoms of CDKL5, and one I was just introduced to a couple of weeks ago when Sonzee made a new friend.  

I have watched the clip including the quote on the top of this post 30 times at a minimum.  My eyes filled with tears and yet my heart full of happiness simultaneously.  I guess a summary of my experience this far.  I think the notion that special needs families are bulletproof holds some truth, but at the same time I am torn because I think there are times that the bullets penetrate and even after recovery things will never be the same.  The fact is, the bullets just keep flying. 

There is something to be said about the resilience of special needs families.  That's not to say that if your family isn't in this world that you are exempt from struggles or trials.  It is just a special needs parent develops a hard shell like a turtle yet with the elasticity of a rubber band.  Many things are thrown at us, some make a dent, but a lot of it we just send flying right back.  We are a special blend of warrior and human combined...and our lives are far from normal.  Sometimes it would be easier to go back to the way things were prior to having a special child, but then I wouldn't  have the understanding of resilience that I do now. 

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