ENDURANCE

Hospice is not usually a linear journey. You don't get the diagnosis and it's a straight shot,
with level, predictable markers until death. Charlie is up and down, good and bad, and
sometimes horrible. He hovers close to dying and we tell him "good-bye" and are readied to
let go as painful as it would be, but then he'll rally again and here we go another moment,
another day.

Today has been a rollercoaster. Oxygen sats dropping to the 50's, nothing I was doing to
suction or reposition seemed to be working so I asked him, "Are you done? are we done,
buddy? It's okay, honest...."

I gave him morphine and realized the container was, for all practical purposes, empty.
It's Saturday, (enter four letter word which is synonymous with poop).
The pharmacy typically has to have a written script handed to them in person
to refill the med. The doctors were not in today. Chasing this down and
quickly was a priority and a hassle I didn't want and fought to find energy to do.
Our palliative care doctor was marvelous and made arrangements with the pharmacy
to fill the order without much of a hiccup.

At one point, I snapped at the others in the room and asked them to leave.
The triplets were wailing, girls were banging on the piano, Mark was talking with
another friend who'd stopped and I was unable to focus. I'm not always pleasant
when I'm watching Charlie struggling and my best efforts are seemingly ineffective.
It doesn't help at all when Mark snaps back at me and repays my sharpness in kind.
Both of us can be afraid. Fear leaves us feeling helpless and a little powerless.
We have found ourselves reacting in anger because it uses the adrenalin we have coursing
through our veins and makes us feel focused and powerful in the moment. It's a stupid
way to cope and we apologize to one another afterwards but no one should have
the impression we're handling each of these crises with sweetness and light.
It's a battle, and we're not always gracious, or even nice, fighting it.

I have to switch gears emotionally and mentally with little notice. From working
over Charlie with death hanging in the balance, to breaking up fights between 11 month
old boys who are fussing over a toy. The phone can ring with some sales call, and the
teakettle can be going off in the background. We are a very busy household, lots of stuff
happening all the time, and for the most part, Charlie is here, living in the family room,
in the middle of the mix and whacking at his toys and not needing much more than some
oral suctioning. Other times, it's more chaotic and he's gray and he's seizing,
and his face is contorted, tears are dripping out of his eyes and it's
heartbreaking to look at him.

It's never a matter of quitting, but I do question how someone is supposed to keep on
keeping on when life is so awfully unpredictable? I was mulling that over as I sat on the
floor in my closet regrouping, weeping and praying.

I was reminded, "His mercies are new every morning."
That's cool, 'cause I need a new batch every stinking day!

"They that wait upon the Lord will renew their strength"
I'm not always sure what waiting on Him looks like in the nasty now and now? I don't
really much care for *hallway* situations. I like my life to be cooking with gas or let's get
it over already. I don't have much patience for the *in between, hanging on by a thread,
we haven't a clue how long this is gonna be* kind of deal.

I am not naturally patient and prefer times when I know I've only got to roll, for let’s say,
4 more hours and 32 minutes. That's definable. I can set my inner being to endure for that
long. Life in general, and caring for hospice babies specifically, has been a work of grace in
my life. God knows I'm a flawed human and He's doing a good thing in providing
opportunities galore to develop my character.
I'm not what I should be, but I'm not what I was even a few weeks ago. A refiner's fire
is hot for a reason, and I'll be the first to acknowledge I have a lot of dross to burn off.
One friend who's known me for years, paid me the highest
compliment a couple of years ago. She told me I was not the same person I had been,
who'd been frustrating to know given my propensity to get consumed with my
to-do list, running around like a chicken with my head cut off, which is a bloody mess if
you've ever seen that happen live!
She told me, "The difference in you now, that you've come out of the physical suffering
you've been enduring, is that you trust God. It's evident."
Well amen, and hallelujah!
I can feel badly I acted like such a dork for so long trying to do things in my own strength
for God, or I can be thankful He took me to an awful place where I was absolutely humanly
useless and I had to trust He still valued me, or I wouldn't be breathing yet.
My worth isn't based on my ability to contribute. THANK GOD!

There is nothing definable about Charlie's life span. We are not prolonging his life and
we're not hastening his death. My prayer, from my gut with tears, is that God will make it
abundantly clear when Charlie is actually going to die, for sure. That we'll be prepared on
every front. I can't fathom today how this will be possible. Charlie is on life support.
How can he die and it not be traumatic? Our family cannot walk away from
his death feeling as though we contributed towards hastening it by withdrawing his
ability to breathe, period. His death needs to be clean with no guilt on our part to carry. It's
hard enough already without that too.
At this point in time, the possible ways he'd die would be by drowning
in his own secretions, suffocation because of a mucus plug, a possible pseudo bowel
obstruction related to dis-motility issues, or like he's done in the past, he'll drop his oxygen
sats in the tank even while on the ventilator, for no definable reason whatsoever. This
not knowing what we'll face at the end is one of the toughest pills to swallow in the deal.

But, we were in a similar spot with Emmalynn too. Having no idea how long she would live.
We were forced to do one day at a time. My friend told me when I said I wasn't sure how to
keep enduring, "You promised to love her through this."

Yes, we sure did!

And we did endure, and carried on valiantly.

We will do the same for Charlie though Emmalynn lived for 50 days and Charlie is 22 months.
God knows the number of his days and will call him Home at the appointed time. He knows,
and that has to be enough for me. I don't have to do this tomorrow yet, because it's still today.
And that's a good thing to remember when I don't have to strength to take on tomorrow's
cares and concerns.

I look at the video I posted a little earlier of him on the safehaven4babies Facebook site and
marvel at how my little buddy can be on morphine and look so bright and aware.
I probably should do drugs because I look like heck!!
HA!

His skin is gorgeous and except for the fact the vent was going off every couple of
minutes because of his shenanigans, no one looking at him would know how much
of a struggle living can be.

Thanks for reading if you made it this far. I'm singing along with Lauren,
"I Will Trust In You". https://www.youtube.com/watch?v=qv-SXz_exKE