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my fight drive, withdrawn from the world that doesn't fully understand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 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
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Friday, June 23, 2017
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