As hard as I try, and I really do try, there always seems to be something lurking around each corner of our lives that just bring tremendous stress and complication to our lives. No surprise today was the day for my SSI notices. I am rather surprised they went a few weeks without correspondence rather than days, but I knew it was coming. I could feel it - sense that once again the bad notices were destined to hit my mailbox. Two notices arrived today, another overpayment demand for $52, and a notice saying that come August Noah isn't eligible for SSI, therefore again compromising his eligibility for Medicaid and once again risking him going uninsured. This terrible vicious cycle that I just can't get us out of. I have zero idea how they are coming up with these figures. They have to be guessing - or estimating or whatever they do because here it is July 2nd and I haven't even had a chance to fax them in Chris pay stubs for all of June. And if they run two months behind that means June would calculate what Noah would receive in August. I cannot express or impress upon you enough how broken this system is. I already fear Obamacare, as the reality of it is, who really cares about Noah and his benefits now? Do you think that it will be any better when we add millions of more people to an already stretched program does nothing to guarantee access to care, given the widespread access and quality problem which already plague the Medicaid program. Not to mention that only 60 percent of healthcare professionals will even accept Medicaid. Money has to come from somewhere, and they're already trying to cut Noah out of every corner.
Noah received his sleep safe bed this week. That was also an excursion and complicated process. His bed and toilet seat have been ready and available since the end of May, but because of vacations, excuses, insurance whatever the case may be we had to wait until June 27th for delivery. Of course as things often go I receive a call after the scheduled time for the items to be delivered informing me that they didn't have a truck big enough to deliver Noah's full size bed. They finally dropped off his toilet an hour late and then informed me that it was likely Noah's bed wouldn't even fit up our staircase. I was told I'd likely have to consent to ordering a smaller size or having it dismantled altogether. The bed then arrived two days later with zero problems with its size or getting it up our staircase. The toilet seat Noah still can't use because it doesn't have back sides, a vest harness or a commode container, all of which I will need to wait on. I don't feel like it's too much to ask for someone to just take an interest in making Noah's life better. To think gosh if this was my child, the service you'd want to make sure he got. But it just feels like he's another number in the system. Does anyone even care about what he truly needs, about making his life better? Equipment vendors see Noah as a dollar sign, SSI and Medicaid see him as a financial burden on the state, and I shutter to think what value Noah's life will have amongst medical professionals when they cut corners, costs and are flooded with people in waiting rooms. Will someone care about him then?
While we are relieved that the sleep safe bed came, Chris had to make some alterations to it to make it quit rattling as Noah moves around a lot in bed and likes to kick and hit the sides, he's like an acrobat in bed, flipping, rolling, turning. He most definitely needed a full size to move about like he does. Part of me is relieved that after years of waiting and trying that Noah finally scored something he needed while another part of me is slightly sad that he even needs such a bed - after all it's like a fancy hospital bed. The rollercoaster of emotions that you experience is phenomenal and I'm not sure anyone could truly understand unless you were living it. I crave more than anything to find ways to offer Noah a normal childhood, to be a normal child. I found a place willing to make Noah a handicapped accessible playhouse... but the starting price tag is $3820 and would go up from there with additions and accessories, I still dream of obtaining him a freedom concepts bike so he can ride a bike with Luke. I am trying so hard to put some "normal" in our lives. To feel like we're not so different, not so on an island of our own. But the price tags on anything for Noah is like buying a new car. It's so sad that they access these outrageous costs to families that really have the least due to what special needs does financially to a household income.
Yet tomorrow is another day, and I have to keep trudging on, I have no choices in this. As worn down as I am, as defeated as I continually feel, Noah needs me to keep trying for him. I'll contact SSI once again and see what recourse if any I have to fight the latest news in the mail.
"Courage is being scared to death - and saddling up anyway!" -John Wayne
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.