Thursday, November 19, 2015

An Outsider Looking In...

An outsider looking in might just think that our lives are doom and gloom with a child who has special needs.
Little do they realize that our child is exactly what lights up the dark corners of our life. But there is a dark side to special needs parenting.
One that people don’t often realize when they think about what our lives must be like. It’s really all the outside challenges that we face while caring for our child.
It comes in the form of having to fight for government services, which most of the general public falsely assumes covers all the financial care and overall needs for children with disabilities.
An abundance of emails and telephone calls to follow up on your child’s affairs ranging from making appointments to following up with agencies designed to assist you through the special needs journey.
The financial stress of never knowing how you’ll fund out of pocket medical, therapy and equipment costs that insurance denies.
The utter exhaustion because you realize that you can’t just be a parent, but that you must also juggle the title of being your child’s personal secretary and advocate.
Searching for opportunities that otherwise wouldn’t exist or just land in your child’s lap, hunting for foundations, grants, and seeking donations through endless fundraising.
Sometimes the feeling of being of being alone can be very overwhelming at times.
It is in realization that you can’t even go out  without the world staring at your child and looking at you either with tremendous pity, relief your child is not theirs.
It’s in the lack of kindness and consideration when you desperately need a disabled accessible parking spot with eight-feet of clearance to unload your child with his ramp, but can’t find one because an able-bodied person with no parking permit has decided they are more of a priority that day.
These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child with special needs.
They can make you question your own worth, and sometimes make you feel like you are failing. Failing to help your child in all ways possible.
We must remember what it is all for – our child. And keep marching towards that beautiful guiding light on the special needs journey. That light is worth all the dark corners that we endure.
( I got some of this from a friends Facebook page. It really hit home today. Thanks Melanie)

“To be a star you must shine your own light follow your own path and don’t worry about the darkness for that is when the stars shine brightest.” unknown
The Dark Side to Special Needs Parenting
5th, April by Noah’s Miracle

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