80 Degree Weather Followed By A Blizzard

"All this, after several sleepless nights because you’re just worrying about your child staying alive. A battle on every front. Every time I turn around, there is something. Nothing is easy.  Doctors, insurance companies, providers, schools….it never ends. I’ve had a good run for a while, so I guess I was due. But it’s only going to get worse, at least in the temporary. Our medicaid renewal is due and I’ll be denied, because I’m denied every time. He qualifies, but they deny. I appeal, they approve. EVERY.SINGLE.YEAR.All the while, shouldering a painful awareness of the fragility of life and my own child’s mortality."   -  Parenting A Child With Disabilities: A Battle On Every Front Leads to Battle Fatigue

I read the above article and I identified with the writer so much. It's rare, but there are seasons with us where appointments, calls, fights with insurance, ER visits, more appointments, co-pays, actively waiting for approvals don't pile on top of one another, so in those times I focus on taking deep breaths and not expecting the next bad thing. 

Garth, your wisdom astounds, man. 

We live this life that we never know when the weather is going to change. Which is pretty much like living in WV, amirite?

One day the sun is shining and we're happy,

the next day is a blizzard and we're scared, 

which makes it hard to enjoy the sun 

unless you do it on purpose. 

It makes it hard not to flinch 

at every rush of wind. 

And this blizzard? We never saw it coming. It's one that hits the day after 80 degree weather--we need supplies but can't get out to get them. 

The people who could actually help us say no first because it's "what they do." It's policy to deny what we need, even if we have proof that we need it.  Finally, after many cries for help, hope in the form of a helicopter comes but only drops off a loaf of bread. A single loaf of bread?  What's that gonna do? 

We begin signaling to them and screaming,

 "WE DON'T NEED BREAD, 

WE NEED SAVED OUT OF THIS BLIZZARD, 

GET US OUT OF HERE!" 

They respond back with, 

"Ohhhhhh you need saved...

Hmmm, what to do what to do? 

Well let us fly back to Hawaii, 

get that approved, and we'll be back 

next summer to get ya. 

IF it's approved. You're welcome.

Good luck in the meantime 

and enjoy the bread 

that you don't need

that cost you $4,000." 

I share this not to complain but to bring awareness to what it's like to live with a medically complex child (or 2). It. Is. Insane. Things need to change and I don't even know where to start except to keep plugging along, keep trusting that we are sustained because we are. We just are. What is our track record? CONSISTENT SURVIVAL.  Which is something right?