Monday, December 12, 2016

Where We Are Now

My blog posts on Noah's blog have slowed down a bit over the last few months.  There are a handful of reasons for this.  I've taken on even more guest blogger commitments, I've immersed myself in advocacy endeavors, I'm homeschooling, and sometimes there is so much to say that it's hard to put it all into proper words so I purposefully avoid doing so altogether.  Silence is sometimes comforting.  It offers you no advice, no criticism, no false expectation of support, no artificial forms of caring, or unfulfilled promises or gestures.
The holidays - oh gosh the holiday season.  It sneaks up on me every year even though I start preparing in September and am often in full bloom by the first of October in rescue attempts to aid other special needs parents during the holiday season through various personal projects. I still can't catch my breath no matter how hard I try to prepare for all that it entails.  And Noah's birthday - always a complicated mixture of delight and emotion mixed in.  It's hard to believe we've been celebrating our Miracle eight years this year.  So much has happened in those eight years that I feel like it could have been spread over ten lifetimes.  But for better or for worse it has brought us to where we are now.  

Things continue to be challenging obtaining Noah's needs.  He is met with more denials than approvals.  I have four current pending appeals hearings lined up in the new year for Noah.   One: A VocalID denial because the State doesn't think it's necessary that Noah have a personalized voice.  Two: Mygo Leckey Tour Base denial because the State thinks it is a caregiver convenience to convert Noah's feeder chair to a transit ready wheelchair and they suggest I simply ask them for a much more expensive Hoyer Lift instead (which mind you had a completely different purpose).  Three: CarpetSaver denial because Noah's Waiver doesn't know the difference between a floor protective cover product that is machine wash and dry friendly and real actual carpet that is permanently attached to the floor.   Four: A Wedge Pillow from Bed, Bath & Beyond, because his Waiver is certain there is an insurance code for it through EPSDT Medicaid, when no such code exists for a typical item you find a local retail store and has no Medicaid contract or vendor for.  Noah also has other requests in that have gone for weeks and months with no determination or decision and the State says they have no deadline that they can take as much time as they wish.  One has to wonder if I'm supposed to interpret that as years at this rate. 

Yet, families like ours seem to be really at the mercy of a "mother may I system," that is designed largely to conserve funding or pocket it (who really knows without true transparency in the form of public audits) what happens to this money that is supposed to be set aside to help children with disabilities.  It is exhausting however to continually have to pursue benefits that should be covered for Noah in the form of continual appeals through an Administrative Law Judge.  Thankfully, the judicial system is one that I made a career out of prior to Noah's birth and an arena that I'm familiar with.  For most parents they feel defeated and lost before they've even begun.  For them fighting it through an appeal isn't always a realistic option as the process is intimidating, and in most cases fruitless given the State can reverse any ruling by an Administrative Judge with a simple filing of an Exception to Initial Decision which simply renders the appellate process moot.   And if you look back on any December blog post in the last eight years you'll find this time of year is quite popular for denials and appeals in Noah's direction.  End of year funding conservation perhaps?  One always wonders, but there is a curious pattern to my December posts.

This is the first year I'm essentially winging the holiday without a hand up.  Meaning there were no foundations or grants or charities that I haven't trail blazed through the last eight years to carry us into this year's Christmas season.  I look at Noah's Santa stash and think will it all be okay?  Naturally shopping for Noah is complicated when special needs toys cost just as much as a medical equipment these days - and you have to tenderly balance out shopping in newborn to 36 months of age isles at the toy store.  Noah cognitively is eight, even if his body hasn't been physically able to catch up with his mind - he still craves what a typical eight year old does.  His tastes in movies are age appropriate, likewise his desires in toys are the also yearning to be age appropriate.  And making the holiday season work for Noah takes a whole lot of creativity and would require more financial resources than we happen to have at our finger tips.  For most families this can spiral them into a host of various forms of depression and despair at the holiday season.  And I've always known that so I work towards helping others in order to escape perhaps that realization for own set of circumstances.  It's always been my philosophy that if you are so engulfed in helping others that your soul has little time to dwell on such things. 

But as hard as the challenges continue to be, there are still moments of pure bliss and joy that comes along with special needs parenting.  Those moments are also often hard to put into words unless you walk a similar journey.  The things that give me great pause and fill my heart are often the little things that most simply take for granted.  And I eat up those blissful moments as the fuel I need to help Noah in all the ways I can.  He's just simply a magical human being and I continue to feel so blessed to be his mother.


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