Over the summer, we were hit with a triple whammy. Over the course of just a couple of days, we got three letters, one after another. Each one was a punch in the gut, increasing in intensity each time. First, the SSI benefit Sam had been receiving that was our only available option to pay for therapy was being taken away effective the following month. This, just after receiving a letter a couple of weeks before that saying that he had been approved. Then, a second letter informing us that since Sam's Medicaid insurance had been tied to his SSI, and because he lost SSI, he now also lost his health insurance, effective the following month as well. Still reeling in shock from those first two letters, the final blow that landed me in the fetal position was a third letter from SSI informing us that after their research, they had determined that they overpaid us - by 100% - for the previous nearly two and a half years; oh, and by the way, now we had to pay them back a 5-digit amount. It's hard to get back up after getting knocked down as hard as that. But it's so much harder to muster the strength to fight back.
I could tell you all about the myriad phone calls I made to literally every lawyer in town and that not ONE of them was either able and/or willing to help. Lots of lawyers dealt with helping people get benefits. But when it came to appealing a decision that lost benefits, specifically for a minor, no one would touch our case with a 10-foot pole. I could tell you about the many, many conversations I had with friends and family about what exactly was happening, and how it was just so wrong, and how we all felt so angry, yet so completely helpless. And I could tell you about how I broke down and cried and agonized and pleaded with the people in the Social Security office.
But this post isn't about any of those things. It's not about justice. It's not about the facts. It's not even about emotions. Even incredibly strong emotions. It's about two things: peace and perseverance. Both are necessary in order to fight.
We've received a lot of letters since the first one that started the whole thing. And despite the fact that my breath would catch in my throat every time I saw another letter from the Social Security Administration, always a large wide rectangular envelope and very official looking, there was always this little voice in the front of the back of my head that said, "Don't fear. It's going to be okay." Inevitably, the contents of the letter would indicate otherwise. Yet, those words were enough motivation for me to continue functioning instead of crawling in bed and hiding under the covers until it was all over.
I had to schedule a few different appointments and talk to SS representatives in person. Despite the pit in the bottom of my stomach every time I walked in the doors, and even though tears streamed down my cheeks and my voice broke as I gave my explanation and answered their questions, I could still hear it. I still felt it. "I'm here. I'm in this. I have already gone before you. Do not fear."
I really wanted to crawl into bed and hide under the covers until it was all over. Except it could not possibly end without me doing something about it. I suppose I could have ignored everything, but sooner or later, I would be found out and forced to deal. So I had a choice. Either do nothing until I was forced to do something - which would be definitively worse to wait - or I could steel my nerves, gird my loins, set my face like flint, and put my big girl panties on and do what I needed to do.
Because that's what we parents do.
There were days when I didn't make phone calls. There were times when I fought against it. At least once or twice, I seriously considered running away. Okay, it was only for a second, but I thought about it. There were tears that fell as I cried out to God that I did NOT WANT TO DO THIS!! Even as I waited for someone to answer when I did make those phone calls, I thought to myself how much I absolutely hated having to go through this. Why was this so hard? What kind of system is this that is managed in complete retrospect? Surely I wasn't the only one who's ever gone through this in our area; why was it that I could not find even one lawyer to help me? Our congressman's office was helping, but even their hands were tied beyond a certain point. All they could really tell us was the same thing the SS office was telling us. They were not allowed to accompany us to any appointments. So really, we were still pretty much on our own. No one could go with me to the appointments, except my husband. No one could speak on our behalf.
Because I am my son's representative, I am the one responsible for everything. I had no choice in the matter. I had to do it. I had to keep the appointments. I had to fill out all the paperwork. I had to gather every piece of information that showed our financial position. I had to make sure every expense was accounted for. It would have been easier to draw a vial of blood than to figure out exactly what I needed and make sure I had it all. Even then, I would find out during the appointment that I was missing something that wasn't told to me before. It seemed to never end. But I had to keep on keeping on.
So what motivated me to keep on keeping on when I so badly just wanted to run and hide?
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. - Deuteronomy 31:8
These are the words that echoed in my head immediately following any thought about the whole situation. Every time I pulled another fat rectangular envelope from the SSA out of the mailbox, my mind would begin to race, but my heart felt oddly calm. It was because of that quiet, not-so-mysterious peace that I was able to persevere, even when I really didn't want to.
When it's hard? When you really, really, REALLY don't want to fight the good fight? (By the way, it really is a good fight) - steel your nerves. Gird your loins. Set your face like flint. Then...
do what you need to do.