Tuesday, October 27, 2015

Just A Star Trying to Light Up The Dark

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My blog posts have been sporadic - not a indicative of nothing going on, but rather too much happening around me at times that I don't even know sometimes how to process it all into words.  I have all these burning fires that I can't seem to extinguish and these fires keep sparking new bigger fires.  I'm overwhelmed sometimes trying to keep up the good fight... or whatever you'd like to call it.

Noah's CCB decided not to appeal his pillowcase appeal win.  I was holding my breath waiting for their deadline to pass to file an Exception to Initial Decision, something I fully anticipated and expected they'd do.   I kind of wonder if they just forgot or if they intentionally threw me a bone.  I have so many worries about Noah in the night at the moment.  His stridor and breathing is different when he sleeps, and his sheets will occasionally have staining on them, which can vary in color, sometimes white, yellow or clear.  He's not sick, and we've ruled out ear infections at the doctor. It could be acid reflux, could be secretions he isn't processing well at night, could be allergies either seasonal or to something in the house... I'm hopeful that maybe the increase use of the anti-suffocation pillows now that he's been allowed pillowcases may help to try to elevate him.  Sometimes I'm really at a loss, I don't always know how to fix the problem, but it does keep me up at night not only trying to solve Noah's sleeping patterns but to also watch him like this hawk glued to a barely working baby monitor.  I've been trying to nurse this monitor along as they don't make this model anymore which will cause me to buy two units instead of one so I can watch Noah in multiple rooms - with two screens.

I recently received the date for our next appeal regarding sensory clothing from the Administrative Law Court.  It's in December shortly before the holidays.  I always seem to have something legal to deal with in the month of December for the last seven years.  It complicates the season for me, I'd be dishonest if I said it didn't add to the weight that I feel at Christmas.   This Notice of Hearing procedure is different from how all the appeals that I've ever done for Noah have been handled.  They have scheduled it at the OAC - (Office of Administrative Courts) locally in my county.  And it appears they want me to appear and then do telephone testimony from that location.  Previously, I have been able to call in to the courts and present my case and testimony from our home phone while I care for Noah and his little brother - which don't get me wrong is hard too when you're parenting and conducting putting on evidence as to why the State wrongfully entered a denial against something Noah needs.  But it's just what I have to do, not matter how difficult it really is for me.   I put a call into the Courts today for explanation of the change in procedure, they say this is standard although it's the first time I've ever seen an OAC scheduled hearing.  I suppose I'm a tad leery about this next one as I don't trust the State's intentions.  I feel like the tables are very much turned against Noah because I have become a strong advocate for him.   And I always feel like I'm alone in all this.  No one to back me or be in my corner to help me fight through it.   This is all such an exhausting process just to help your child. 

And because apparently because I can't seem to escape courtrooms these days when it comes to Noah, I found myself last night at a public hearing regarding a proposed Verizon Wireless Radio Tower which they want to install practically in my subdivision.  Radio Towers can come with a variety of opinions but generally  you're either on one of two sides.  You either feel they are safe and no big deal to have in residential areas and could care less about them being built on top of you, or you have strong feelings that they do not belong in residential areas and can create a multitude of problems, from health concerns, to reduction in property values, to excessive noise, to it being an eye sore to look at in your backyard.  Interestingly enough that even though there are a wide variety of health concerns that are linked to radio towers in residential areas, including but not limited to altering DNA, Metabolism, Genes, Hormones, Headaches, Memory loss, Cancer, Birth Defects, Heart Conditions and Alzheimer's, a City and County Board is prohibited from taking any potential health factor concerns into account during an approval or denial process of a proposed radio tower site.  Government can be really great at making it an unfair playing field.  However, as a mom to a severely disabled child and one that has a severe sensory processing disorder, there is no way that Noah could handle the continual sound that a radio tower so close to his home would emit, Verizon could not guarantee that the tower wouldn't necessarily run interference with his medical equipment or video monitoring systems that we need for Noah, and Verizon couldn't disagree that our current contact with 911 and calling for emergency situations for Noah either by landline or through the use of our own Verizon wireless cell phones was not problematic.  The really sad thing about all this is they want to use a church site to build a tower.  They would pay the church a monthly rental fee to house their radio tower, the church wants the money... desperately in fact claiming they will go under without Verizon's money.   Verizon seeks out churches for this very reason because they have a higher zoning laws due to cathedral-like structures so they try to sneak in these 52 foot towers on church properties frequently.   I never thought however, I'd have to battle to keep one out of my own neighborhood. 

But that's exactly what I was doing before a board of County Commissioner's.  Pleading with them not to increase my worries and concerns as we can't pick up and move again.  We moved twenty-seven months ago to this home, something I never wrote about because that too came with it's own pain that I couldn't put into words at the time.  Nearly two years later I'm finally coming to terms with the circumstances surrounding our sudden move.  And now I'm trying to modify a home to meet Noah's needs.  I'm doing the best I can do to make this home a safe and healthy environment for him. 

The County allots you three minutes to state your feelings and opinion on an issue.  It's hard to cram everything you want to say into those three minutes but I did the best I could do.  Other neighbors joined me.  None of whom I knew.  It's hard to get to know anyone when you're home-bound caring for a child like Noah.  Even though I'm surrounded by lots of neighbors it still feels like I'm not, I know really none of them.  I was glad however that I was not alone in my feelings and that not a single neighbor was in favor of this proposed radio tower.  The City and County came back with a decision of denial, but it's not over yet.  Although they are recommending a denial the County has a final hearing on November 24th to determine if that recommendation is appropriate and within reason and should be finalized - appeals like with anything I'm sure could also happen.  So, yet another court date looms on my horizon. 

Cumulatively, I'm so tired.  I'm more tired I think than I have been in years, my body is screaming at me to rest, but my mind says don't you dare - think of Noah and do what you must do.   I'm also I suppose a bit devastated too with recent word that a nearly two year project that we were working on with a media source with Noah is likely going to get scrapped.  I've invested countless hours all with the hopes of finding some sort of peace at the end of it.  And again I feel restless, and like I'll never be able to have any conclusion or closure that will ever feel good. 

"One must still have chaos in oneself to be able to give birth to a dancing star." Friedrich Nietzsche


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