Friday, June 23, 2017

Remember that Every Path is Walked For a Reason

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For months now I've been weathering what I'd call a perpetual storm for Noah.  The beginning of the year Noah suffered back to back illnesses for almost 4 months straight - a common cold never being just a common cold.  Several different antibiotics were required to get Noah well.  In a desperate attempt to prevent Noah from falling ill to visitors or therapists bringing germs into his own home environment I sought out a UV HVAC lighting system that would kill germs in the air or a sneeze within 3 feet.  I lacked the funding possible to install this device, I sought out emergency funding with the State only to be put off until July before I can feasibly submit an application that likely will face a denial.

I've battled three appeals in the six months, for items that were denied in the middle of last year; VocalID software for Noah's AAC device, A Mygo Leckey Tour Base to convert Noah's feeder to chair to a transit ready wheelchair, Carpet Saver (a floor protector to protect Noah from laying in his drool, incontinence accidents, acid reflux, and vomit from his habitual sensory gag to noises like our dogs barking, or the RTD bus driving past our backyard), and a $100 Wedge Pillow that doesn't carry an durable medical equipment code.  I've prevailed before an Administrative Judge time and time again, only to have the State continually file an Exception to Initial Decision against me which overturns all favorable rulings before a Judge rendering the appellate process moot.   I've cried countless tears, tried to get angry to feed my fight drive, withdrawn from the world that doesn't fully understand my trials, and sat in silence with my feelings in order not to place burden and worry upon others. 

I've struggled through the exhaustion to complete and accomplish things required for Noah's daily care; CEU classes for my CNA license to manage Noah's nursing care, renew my CPR license, and maintain yearly competency testing.  I've scheduled and maintained Noah's therapy schedules, and his in-home therapy exercises, I've made numerous DME (Durable Medical Equipment) appointments, written more emails than I can count regarding Noah's affairs. I'm driving more than an hour one way, for a 4-5 hour appointment several times a month to fit Noah for a new ASO for his power wheelchair to help him gain as much independence as I'm able to teach and give to him.

I've faithfully submitted all of our paystubs to SSI by way of fax and certified mail each month timely, only to have them send me yet again, another over payment demand.  The anxiety that the mailman brings to me feels like it is only increasing.

I've sat in the middle of the floor huddled  by my two boys, with their eyes full of such confidence and admiration in me, as I struggle to grasp that I'm on my days failing to provide the things Noah needs for his quality of life regardless of how hard I fight for him, and short changing Luke of a typical family dynamic - something that will always be beyond my control. 

I've run on very little sleeping fuel, as Noah has had off and on again increased sleep challenges, troubleshooting if it's his numular eczema flaring up, an diagnosed ear infection, teething, or breathing complications or of course my worst fears the return of Noah's nocturnal seizure activity as the root or cause.  I hang on every hiccup, every ounce of laughter, I am glued to every sound of his movement for signs of an emergency. 

I've prayed so hard to God to offer me relief.  Just one day I'd ask him for.  I kept saying I just need one solid full day full of no bad news, and everything to be okay - just for one day.  Just so I could breathe - just so that I could remember what it feels like to have both an emotional, physical and mental day of restoration.  To have all challenges dissolve - just for one day.  I needed just one day. 

Today God gave me that one day, and for that I am forever grateful.
I fully woke up prepared for war, knowing I'd have to contact SSI about Noah's over payment.  Fully expecting that I'd be told file your request for appeal and waiver, even though fully knowing the over payment request was not my fault.  I expected a hostile conversation - as they usually go; heated, curt,  and full of disdain.  Yet much to my surprise I received a clerk on the phone who was rather pleasant and willing to verbally waive Noah's over payment demand on the phone rather than require me yet again to fill out an appeal and waiver paperwork, which saved me countless hours in not only drafting appellate paperwork but having to appear by person or in phone to battle something that wasn't my fault.  Something that felt like a weight had been lifted from my shoulders.

I connected with an beautiful opportunity for a way to have Noah attend races at Bandimere, something that continues to be a dream for us as a family.  And it wasn't pure chance, as this sweet gentleman on the phone sharing with me his own personal trials with his wife having cancer, and his curiosity about the names of both of my boys and how they came to be.  It was as if God spoke to him and told him to connect with me as he shared a bible verse with me, and reminded me that God is collecting my tears for such purpose.  I wanted to hug him through the phone.  A complete stranger.  A complete beautiful stranger sent to give me a message that I needed to hear because I've cried so many tears recently out of frustration and sadness for the things I cannot change.

But the blessings didn't stop there.  God sent me yet another stranger, who feels like this flower that was waiting to fully bloom at the perfect moment, who wants to assist Noah with the VocalID software that the State denied Noah during the appeals process.  The timing of today certainly not chance but divine orchestration of an answered prayer.  In fact, just thinking about it all, propels me into tears of relief and tremendous gratitude.  God sent help to my sweet Noah, while telling me I could rest for a moment in the fight for all that he needs.

And my mailbox filled today with only one thing.  Not a letter, not an oversized envelope with bad news, no bills demanding payment.  A box labeled with Noah's name on it.  A care package from a dear friend at the Butterfly Fund who sent him sensory socks and a gift card to Target.  Earlier in the day I was thinking about how low Noah was out of all the baby food pouches and cereals, supplements and specialized food products I get for him - and the perfect gift of help arrives.  I've been faithfully washing Noah's only six socks as fast as I can because they are the only ones that don't cause him sensory distress.  Never openly discussing that fact or advertising it to anyone.  Yet, God knew and planted someone to come to the rescue with my wish of more socks for Noah.  They couldn't have known.  No one could have known.  Pure divine intervention.
And as I sit here writing all this, I want you to know that I only asked for one day.  And I received it.  I know tomorrow I'm going to wake up to more storms on the horizon and that's okay.  I'm ready, I will always be ready.  But I feel so blessed that I was gifted with one day of rest and restoration for my soul.  And to all of you earthly angels who likely don't know that you're all connected in my day, full of rest, messages and blessings that you brought into my day, thank you. Thank you for reaffirming that I'm not alone and for reminding me that I'm connected to something so much bigger than all this.


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