Saturday, August 5, 2017

They Don't Make a Pill For This

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Empathy is a dying emotion that we all should possess.  Society is developing into a don't bother me realm, and one in which isn't going to be very sympathetic or share a listening ear when you try to be expressive of the challenges that come along with special needs parenting.   There is a pill for that they say.  Go see a doctor - they can fix anxiety and depression and all sorts of things...

I assure you there isn't a pill that can fix the roller coaster of emotions that come along with special needs parenting.  The assumption is that naturally if you have a child with special needs then perhaps you too either have mental illness or will develop mental health illness as a result.  You'll be plastered with self-care articles, friends who'd rather tell you find a pill for it than embrace you in a hug, sit with you and coffee while you cry, a stranger who sees your distress and offers to help you pick up the pieces and become your hero.  We're in a very distant type of age.  One where social media has over taken any real sense of simple face to face interactions and relationships.  Yet countless special needs parent sit in this empty zone.  One where they are criticized at the very slightest inclination that they aren't bearing all the hardships and challenges with anything but a smile on their face and a skip in their step.
What people fail to realize is that our children aren't the problem.  In fact, that is really where our greatest joy grows from.  We pour ourselves into our children, their happiness, and the love that they bring into our lives.  It's all the outside chaos that could be changed - that needs to be fixed, that could be so different that is the root cause of our special needs distress.  It is all the complicated emails, it is the system and all the government agencies we have to deal with, bad news that comes daily in the mail, insurance denials, forms to fill out, endless appointments coming our way, trying to digest and get our head around yet another diagnosis to add to the growing list that defines our child on paper, financial hurdles, and the out of pocket expenses without the means to pay for them.  The constant feeling that well you're continually losing on all fronts of your life because you're giving every ounce of yourself to fight for the needs of your child.

There isn't a pill you can swallow that will justify the the fact that Medicaid has overturned another Administrative Law Judge who ruled that a request was a medical necessity and Medicaid laughs in the face of any Court decision... there is no pill you can take to deal with having to report wages to SSI monthly, or fight overpayment demands, there is no pill you can take that will help you figure out where to pull money out of thin air for uninsured medical costs, or a pill that can make you forget about how full your calendar is with appointments, no pill you can swallow that will lessen the pain or stress of any of it.  

The cure lies in help that isn't there.  Legislative changes that make it easier for families like mine to actually go before a Judge and force Medicaid to comply with a favorable ruling; better employees that sit behind the Social Security desks that both speak fluent English and know how to do basic math and not be four months behind on calculating your household income; caseworkers that don't sit on your applications and requests for weeks or months before making a determination, durable medical equipment providers that care about your child's well being far beyond being a financial figure to them and their company; State governments that don't do everything in their power to try to block you from you child's medically necessary needs for a quality of life; friends and family who want to be there with you in the trenches - and I do mean the trenches.   In the thick of the bad and the good, who will cradle you in the hard times and who will want to help restore your faith that things will be brighter and better tomorrow.  The cure really lies in that we need more help that we aren't getting.  The system is failing us, society is failing us, and our friends and families are failing us... there simply isn't a pill for that. 


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