Wednesday, June 3, 2015

When the Tone Changes

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I've been trying to pedal faster.  Something my mom always use to tell me in childhood.  A phrase intended to mean work harder, try harder, keep going.   Yet sometime no matter how fast you pedal, you can still be pedaling in circles.  This road that I will always be on called the Special Needs Journey, pedaling my heart out.

I keep trying to find help in all the "right" places.  I spend gobs amount of time trying to figure out the next step of help for Noah.  The older he gets the more costly his expenses become.  I can no longer punt with baby strollers and make shift bath seats out of typical baby high chairs that I strip of fabric and lining.  Recreational items are triple the cost.  A toddler adaptive bike costing $1,000 out of pocket is now $5,000 for a child Noah's age and size.  He outgrows equipment easily.  His long legs, and trying to get Medicaid to understand that not every child is on a growth chart of not needing a new wheelchair but every 3-5 years will likely never happen.   Fundraising efforts do very little these days, partially because I think everyone grows weary at some point in time of what feels like continually ongoing fundraisers for Noah.  I hunt out non-profit organizations that best that I can - now needles in a haystack because you can only use one resource once then it's gone.  Most of which I burned up on Noah's early intervention years (ages 1-3).   

Non-profit help also tends to be a very time consuming process.  Lengthily applications, copies of your W-2's, recent tax returns, a story about your life, pictures of your child so they can see if he's "cute enough" to be added to their marketing campaign for donors, doctors and therapists recommendations, letters of confirming diagnosis, and that Noah's condition is degenerative and severe enough to be considered worthy of help.  I jump through all the requested hoops,  sometimes happily, sometimes not.   I'll get a hold of many of these non-profit directors, we'll have heartfelt conversations about supporting Noah and our family in the community, talks of "we are here for you,"  "we'd love to meet you," "you're not alone, don't worry we promise to help," "It's a God thing, you found us for a reason."

I think that the goal is within reach.  Help for Noah is on the way, be patient, good things will come I tell myself.   I feverishly fill out all the applications to demonstrate Noah's eligibility for help, copy all the requested documents, reach out to have his doctors confirm diagnosis and prognosis for his life.  I mail it in, timely....

Then Silence.

And More Silence.

Finally I decide that a lot of time has passed without an update.  No phone calls, no emails.  Just silence.   So I start trying to send sweet emails politely asking for a status update of Noah's submission for help.  Trying not to jump the gun or be a nuisance.  I give it two more weeks.  More silence.  I decide to pick up the phone reach out to the directors and those who promised to help.  I leave messages, that go unreturned.   A week later I try again, finally reaching someone who picks up the phone by chance.   The same person who promised help now has a change of  tone to their voice.   No longer are they wishing to meet Noah, let alone help him.   Excuses follow for why they've delayed getting back to me, their tone says it all:  "we were trying to avoid you with the hopes you'd fade into the sunset and just go away."  They deliver the news as fast as they can followed by a list of excuses of why they didn't get back to tell you they've decided to decline help.   I've been golfing, surgery, we've had board meetings, we've consulted attorneys and they say we can get sued if we help you over another child, our large fundraiser didn't do well so we can no longer help you.  I think I've heard it all.   The let down no less hurtful regardless of how they go about.  Half of me upset that they didn't have the courtesy to find a better way to reject Noah's plea for help, other than to pretend that an application was never submitted, and assume that I'd understand that silence meant no. 

It's almost that feeling of when someone holds out both their hands to say I'm here for you, don't worry.  We've got this, we'll help Noah.  I take those arms and believe in them, only to have those same arms push you away and say... well just kidding.   And time and time again this happens.  And I am left feeling so incredibly stupid. 

I have such hope and faith in all things - people even that they have true intentions.  I suppose I'm an easy mark.  Easy to get sucked in by false promises, as in the end my mother also taught me that sometimes things are too good to be true.  Yet where do I continue to look for help?  Believing that there is hope, someone saying yes we'll help you guaranteed just fill out our application to make it official... then nothing.   Why not be honest?  Why lead me on to believe that help is there when it isn't?  Why allow me to invest all of these precious hours gathering required documentation all for nothing?   That is the worst thing that a non-profit organization can do to a family seeking support and help for their child with special needs.   Don't extend a hand and kind and loving words and promises that you have no intentions of delivering.  

It's hard for me to have faith in humanity,  I want so badly to, but anymore I think I am simply a bad judge of character.  I'm easy to rope in, because I have no where else to turn just like thousands of other special needs families in dire financial circumstances.  Then you start second guessing what changed?  Everything was so beautifully positive and embracing.  Was Noah's picture not "cute enough?"  Did they read something in his blog that made them feel that this mom just "complains too much?"  What was it that caused this change of tone? 

And apparently I've been so focused on trying to find Noah help in all the wrong places that I failed to recognize that his bruxism was caused by an ear infection that maybe had gone on a month or more.  Here all this time I thought I was dealing with a secondary cause of his cerebral palsy, not a warning that his ears were feeling pressure and pain.  It was only because Noah's little brother, Luke got a summer cold and told me that his own ears hurt until the lightbulb went off in my head that Noah too could also have ear pain causing resulting in the only way he could communicate that to me - teeth grinding.  So of course I'm kicking myself thinking maybe if I hadn't been so invested in peoples false promises I would have noticed the warning signs sooner than having to wait until Luke got sick.  Both boys are now on antibiotics and hope they will be on the upswing in the next few days.  My throat raw, either a sign of stress or that I'm about to take on their illness too.   

But at least the sun is now out, the weather and turned into 80 degree days, which makes a summer cold exceptionally frustrating when you can't fully enjoy the nice days.  And now instead of sunshine I seem to be craving endless honesty and sincerity.  Something that I'm not sure readily exists anymore.


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