The Long Winding Road

Not Everyone Will Understand Your Journey. That’s Fine. It’s Not Their Journey To Make Sense Of. It’s Yours-  Zero Dean
That’s the truth of this roller coaster ride we have lived on for the past year.   Cary Lynn has more than kept us guessing and hopping.  Every time I opened up blogger I would find myself just staring at a blinking cursor.  What do I write?

After my last post, big surprise, we ended up back in the hospital again.

At that point the doctors had a serious conversation with me.  First the floor doctor, then pulmonology, then genetics, and finally her Palliative Care team.
It started out the same way.  Pulling up a chair next to me, getting out tissues, wringing hands and awkward throat clearing.  An uncomfortable pause.  Shuffling of feet.  The hum and buzz and beeps of machines.
“Mrs. Fields, we can’t keep going on.  Little Cary Lynn should be at home, not here every month.  This isn’t quality of life for her.  There is nothing more we can do.  Why don’t you take her home and enjoy your time.”
I stare back and glare at them.  My eyes hold anger and accusations.  All these pretty speeches about we are going to fight and lick this.
“What do you mean?!?”, I glare harder, “What happened to we are all fighting and never giving up?  That you have this all figured out here??  What am I supposed to do, take her home and let her die?!!?”
The silence that followed answered it all.
Apparently, yes, that was what they wanted me to do.  Not one of them could meet me eyes.  Cowards, every last one of them.
So we took her home and signed hospice papers two weeks later.  I was still mad and not on super good terms with our fearless team, but honestly Cary Lynn has always been a medical mystery.  This isn’t the first time the world has thrown in the towel.
Meanwhile, we were just trying to figure out how to pick up our broken hearts.  Trying to help our son understand this new season.  Nights of him crying about the anxiety of it all.   Managing our own pain.  Waiting for the shoe to drop.
Once again, Cary Lynn had her own agenda.  While hospice breathed frequent messages of doom and gloom Cary Lynn started to do something they didn’t expect.  She decided to live.
That really looks like a kid who is on her last legs, right??
Then she really blew their socks off.
My baby turned 10.
Then she had the audacity to make it to Halloween.  Gasp….
So at this point the medical establishment admits that they may have been a bit wrong on her expiration date once again.
Don’t get me wrong, she’s got a lot going on.  We are also still in hospice.  She has had some hitches, but we are all learning how to work through them.  She still has mito and pretty weak lungs and unhappy kidneys.  But despite it all my little one continues to fight back.
As for the rest of us, we are still moving forward.  I’m planning ahead.  For Thanksgiving, Christmas, and New Years.  I am positive that Cary Lynn will be there.  I won’t let fear of the unknown define us.  That’s no way to live.
My daughter isn’t a quitter.  Neither am I.  We will meet the future head on, no matter what it holds.

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