Monday, December 8, 2014

Around Every Corner

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Like with most good news that comes our way.  It's always slightly premature for me to celebrate.  Because around every corner there is essentially a new problem.  Noah's modified bathroom request that was approved under the wire of the end-of-year deadline is short more funds than I actually realized.  Now the amount that I need is $4,163.00 - the amount short that Medicaid will not fund.  Originally I thought we were looking at less than maybe half that.   But with all things there is always a catch.  

Sometimes you wonder if people think just because you have a child with special needs that it automatically means you are financially loaded.  Yep, I just have all this extra cash laying around to pay out of pocket for all of his 8 "alternative" therapies not covered by Medicaid, or his supplies that they deem a non-medical necessity, or equipment that continually gets denied.  Everyone must think I'm wearing a sign around my neck that says "Cash Cow..." Or they just assume that the community is taking care of us with donations and fundraising.  None of which is the case.

We can't keep up.  We're trying.  We've been treading dangerous waters for years now.  While I'm certainly not looking for hand-outs in life I sure could use a touch of fairness.   There is no reason why anything dealing with anything special needs or disability related has to come with these types of price tags.  Makes you feel like you're simply the pray.  An easy mark.  A desperate target.   And there are so many onion layers to all this.

On one hand here is all that Noah needs for a quality of life and daily living needs.   On the other hand no money to fulfill those needs.   This is so different than having a typical child that you can't afford ballet or soccer for... this is what he needs to live.  Regardless, of the fact that I still can't convince some people that having a child with Noah's level of needs is not a luxury.   He will be six in a matter of weeks, he isn't getting any smaller his needs continue to grow with him.  I'm facing hoyer lifts, stair lifts, additional home ramps to get him into the garage and even allow him access to his own backyard.  He is outgrowing equipment that I'll have to re-request.  And therapies aren't getting any cheaper.   And I'm trying to keep up with van payments that are more than a fancy sports car.

I'm craving someone to be authentic with me.  Be honest and mean it.  Want to help me without an agenda.   Be there to simply hold my hand, hug me, and say you know I'm going to help your son because it's the right thing to do. Not because he's a dollar sign.  Not because he's a statistic, or a number in your system.   Play by all the rules and just cut me some slack in an already heavy set of tragic circumstances.   God please send me those people.  I'm growing just so weary. 


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