Friday, April 27, 2012

Let the Hard Times Roll...

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SSI keeps hitting us hard. Yesterday yet once again a new overpayment notice of $1,077.46. No matter what we try - reporting Chris income monthly, yearly it doesn't matter. They give it to you and want it right back. I have no idea what happened to our monthly amount dispute or if he'll even receive a check this month or even be eligible for Medicaid. I can't even begin to describe how exhausting this all is. So now yet again I have to file a appeal/request for waiver and request for informal conference. That is all I ever do weekly. It doesn't feel like a system that helps you at all, but that continually finds way of making your life even more difficult than it already is. I don't know what else to do other than to keep going through the motions with them. I detect there is no answer to these problems, no one that is going to fix it, no one that really's not them that is going through it. It's not their pain, not their life's trials - after all they all get to go home after a 9-5 day and lead normal lives, without wondering if their disabled child will or will not have benefits in the morning. It's just a job to them, what do they care if they are affecting other people's lives? They don't. There's no consequence for them doing a great job or a bad job.

There some parts of this special needs journey that just feels like it suffocates you. We keep trying to be positive, we keep trying to overcome all the hurdles but around every corner there is always something to just beat you down so hard that you keep asking yourself really do I have to get up again just to get knocked down just as hard?

I applied for a grant to see if we could get Noah a Freedom Concepts Bike - one that is customized just for him. A representative flew out from Canada several weeks ago take all his measurements and see how Noah personally moved, as no two people with CP are exactly alike. And this bike would give Noah literally the freedom to look and ride like any other child. The price tag on the bike is something just as far out of reach as most things for Noah. Chris and I remained excited and hopeful when Freedom Concepts gave us some foundations to try to see if they would help Noah with the cost of his bike, yet I got notification yesterday that my answer of "see attached quote" to the question regarding the price of the bike was insufficient. Sometimes the harder you try the harder you fall.

Yet we trudge on, through all the muddy waters, through all the hardships because God depends on us to for Noah's sake.


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