Thursday, July 10, 2014

Never Good Enough

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Be still my aching heart...

After five and a half years, I've done my best to stand tall - that tree you cannot shake.  That mom that never stops fighting... advocating... trying.   But it doesn't matter how hard much I struggle, how hard I work, the countless hours I spend drafting paperwork, writing emails, all the phone conversations, coordinating therapies and in the middle of it caring for two very young boys, one of which requires hands on care for all of his daily living needs.

I project that faith and confidence that I can conquer it all.  And time and time again I stand defeated.   I find myself thinking of ways to conceal my pain.  I purposely avoid discussing my feelings, the difficulties each day brings.  I know that if I openly poured my heart out there, I'd sound like that broken record that plays my heart is bleeding over and over again if I went down that road.   And I'm Noah's mom.  I'm the strong one.  The one everyone looks to for help, support and advice.  I am the rock.  I'd let everyone down if they knew their life-line was often times a crumbling mess behind the scenes, having her own pity party. 

The fight for the Krabat Pilot Crawling device has officially come to an end.  I submitted a nearly 20 page Motion for Reconsideration with 11 Exhibits.   I spent off and on two days drafting it.  My last chance for Noah.  I poured all the positive energy I could find into it.  Noah's win was reversed on a "safety" question of the device, and I spent so much time documenting safety, right down to calling Norway to get all the safety testing results, trials and FDA approval documentation.  The State did not to even file a Response to my Motion for Reconsideration.   They likely knew they didn't have to respond.  The decision was already written on the walls before I even had a chance to type my first word.   It was denied on the basis that I failed to demonstrate "a showing that the Final Agency Decision was based upon a clear or plain error or fact of law. "  I dedicated 10 months towards fighting for a crawling device opportunity for Noah.  I even watched that precious child get up on all fours for the first time in his life two weeks ago and said yes baby momma's going to come through for you so you can take off....

And I failed.

I don't know if Noah will ever understand how truly sorry I am for all of it. 

I am not sure what to do next.  My fundraising efforts have seriously sucked lately.  I don't have time to bake brownies, or after all make potato salad.  I'm doing my best to try to find a foundation or grant to help me, but I've used so many along the way, that it is now like finding a needle in a haystack. 

In the middle of all this I am also trying to find a way to convince Medicaid to fund Noah's bathroom modification.  Even though it's listed as a covered benefit under his Medicaid waiver, a "luxury" they all say.   

NEWSFLASH *** My life is anything but luxurious ***  Although I love Noah with every fiber of my being, having a child with such severe disabilities is the hardest thing I've ever experienced in my life.  And I've been through some really hard times during my life.   And this hands down is the hardest thing God has ever laid before me.   I try to bring grace, tenderness and incredible love to each task before me, while doing my best not to complain about the hardships.

I'm not even sure where to start with discussing what all is starting to be involved in a bathroom modification request, other than to say that I already feel very defeated, and I haven't even touched the surface yet on all I'm going to have to draft, research and submit.   The writing already seems to be on the wall for that too... you just wait on those words... DENIED.  There is no positive feeling about any of it.  I've just done this dance way too many times to know the probability of how it will end.   In a way it makes me feel so stupid for trying.  It shouldn't be this hard to provide for Noah's needs.   Society has this misconception that the government just provides for children like Noah.  If you could only feel my tears at this moment and really understand what this is all like.   Have a firm realization of what our reality is with a child with special needs.  Everyday is an uphill battle and I'm always going to war on Noah's behalf.  In the end it's so cliche that the harder you try, the harder you fall. 

"The human spirit is never finished when it's defeated... it is finished when it surrenders."  Ben Stein.


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