Everyday Chris and fight the good fight trying to make sure all of Noah's needs are met. We think of really nothing else but Noah. We've abandoned all our wants and dreams and turned our every intention into helping Noah. Every single penny we can rub together, every resource we explore. We've lined up various therapies for him, hoping insurance would help, knowing in many cases we were on our own to fund them. There are lots of things sometimes I hold back from discussing because sometimes you have that theory if you talk about them then the monster will grow or something you say will in some way be twisted and used against you. If somehow you can hide what lies underneath then maybe it will just all go away altogether and get better.
It doesn't get better whether you discuss them or not. What is, still is at the end of the day.
Social Security has chosen to audit us, something they say they do to everyone periodically, yet somehow I still feel like I have this red target on my back that I simply cannot see. I was re-interviewed on the phone, asked for all of Chris' original pay stubs, original letters confirming I had to quit my job to care for Noah. I answered the same as I did for Noah's initial intake nearly fifteen months ago, honest in everything I said. When I received Noah's reinstatement questions back in the mail for me to review I knew right away what was happening. They were calculating Chris' gross wages, not net, not his take-home pay like we were previously asked for. I called to correct a handful of minor errors, our telephone number, the fact that Noah couldn't have resided here since 2005 because he wasn't even born then, and to of course inquire about Chris' income calculations. I was told that Chris' gross income on his paychecks were the determining factor for SSI, and as such his gross put us over the guidelines from the very start of Noah's SSI. As a result we will now be required to pay SSI back, and that Noah's SSI award could go as low as $1.00 monthly if they even keep on SSI at all. It's so ironic that the amount you claim on your income taxes has no weight, no bearing at all. Two different government agencies using two different income guidelines to determine how much you made.
Chris' gross has to stay below a certain amount monthly and if it goes over we are disqualified. I know that is inevitable, as you can't go to any employer anywhere and say sorry can't work overtime, because it will kill my kids SSI benefits. The world doesn't work like that and SSI knows it. They know he's bound to go over their "specific amount" eventually hence while asking us for his monthly pay stubs from here on out. I don't know how this influences Noah's Medicaid, my gut instinct says it does or will in some fashion. You would think I would know all the rules inside and out about all of this, but I don't.
Nothing about our lives is secure in anyway. Nothing. Each day the rug gets yanked out from underneath us in some way. You'd think we'd get better rolling with the punches, but we don't. There have been many nights where Chris and I simply hold each other and cry together because we're trying so hard, working so hard, loving each other and Noah so hard. You start thinking is it time to find food banks again, do I call and cancel all the new therapy I lined up for Noah, what does one do? Taking SSI away is a huge. It will impact us significantly. It takes away what little we were able to do for Noah.
There are millions of us out there with special needs kids. No one is helping us like they should. Unless you are independently wealthy prior to your special needs little one you will struggle financially. All children are expensive, but you truly have no idea how expensive a little one like Noah can really be. Noah's parent toddler classes will be around $360, his water therapy if I pay weekly is $85, if I pay monthly or on another schedule it's $160 weekly. Insurance won't go near any of that. You still try to balance all your other bills, phone, water, utilities, food, trash, mortgages, car insurance, car repairs... plus all the additional therapy expenses.
Staying positive becomes often unattainable. I'm always waiting for the other shoe to drop. Because it does and it will, you just never know when.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.