There has been so much on my mind lately, that I find it often difficult to really articulate the seriousness of things behind the scenes. To find the proper words for things I cannot fix, for all the bothersome and complicated problems that I deal with on a regular basis in fact. Behind my seemingly blog silence brews a whole bunch of stuff.
Although I've been slightly mute regarding the challenges we continue to face with obtaining government benefits for Noah, Medicaid denials, financial struggles... it's all there. It never goes away. Yet sometimes you feel like you're this broken record that plays the same song over and over again. I myself growing weary of it, wishing that somehow, there would be a better way. Although I do win some battles I tend to lose way more than I win.
For instance Noah was granted two anti-suffocation pillows under his Medicaid Extensive Child Waiver, which were expensive over a $100 each shipped from the UK (the only place that manufacturers them). That required me obtaining not one but two prescriptions from his doctor as the first one was deemed insufficient. They were ordered which was great, delivered timely - hooray for small miracles. I opened them only to find this folded up mesh-like material which confused me. I read the instructions only to find out that they were two disposable pillowcases - that were required for use as traditional pillowcases that contain cotton or polyester - silks even prevent the anti-suffocation pillow from working properly and makes it's safety features moot. Something I didn't obviously know prior to the request for ordering the pillows or I would have included the pack of 50 disposable pillowcases that were required for the pillow use in the original request. And although Noah's CES Waiver had zero problems approving the pillows themselves, are dragging their heals at best (I'm being generous here with feelings), and another two prescriptions later from a doctor are still telling me that the request is inadequate for approval. I have since faxed them a copy of the warning that says Noah could suffocate from these pillows if I slap a traditional pillowcase on them from Walmart. Still weeks later - nothing. 4 months (and counting) for disposable safety pillowcases. Seriously.
The verdict on the pillowcases is still out for Noah as I'm trying to make due with the 2 disposable pillowcases that came complimentary with the pillows to get you by. Although the disposable pillowcases were not intended to get me by for 4 months but rather a week at best each or as they are soiled with drool, spit, or acid reflux (but mind you the government doesn't really care about those kinds of dilemmas in my life). Noah is a number if even that to them.
And I highly doubt most of the caseload is a priority. County offices have been closed for remodel since January (yes your tax dollars hard at work to make government offices PRETTY!), as a result all county employees are working for home - for SIX months - until sometime in June. No temporary office - nope working from home. You can't even call them - without getting a message that email is all you have because they are out of the office - AT HOME! But this is all okay you know - it should be okay with me, it should be okay with you, it shouldn't be any big deal right? *Enter BIG sarcasm*
And it seems that the county can't take the time to adequately answer my emails and questions. I'm told respite hour notes are inadequate via an email dated March 9th, and that my listing of duties isn't sufficient for providers, so we follow their example only to be told 30 days later that their example is insufficient to be copied each day as it does not offer a listing of different activities. When I ask for clarification and additional information a response in an email: "The example you copied is similar to what I have provided to all others"
Which insinuates I'm the stupid one for not understanding that they keep changing the rules without proper explanation and when I ask for clarification they refuse. Here it is 4pm and almost 24 hours after I requested a phone call to discuss their rather curt and unprofessional email, and yep they are probably too busy doing their laundry or gardening at home to get back with me.
Oh but wait, I can't really vocalize my disdain too much because they hold the key to Noah's recent stair lift request. And if I don't suck it up and kiss the very butts that are egging my mother bear claws on, they very well could deny the pillowcases or the stair lift or the sensory clothing or anything else Noah needs simply out of spite. Such a double edged sword.
Yet there's the truth of it. The things swirling around in my head. (Or least parts of it). There's a lot on my mind these days.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.